{"id":8368,"date":"2024-07-03T15:45:49","date_gmt":"2024-07-03T15:45:49","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?page_id=8368"},"modified":"2026-06-10T16:24:00","modified_gmt":"2026-06-10T16:24:00","slug":"lgmd-milestones-a-decade-of-difference","status":"publish","type":"page","link":"https:\/\/www.lgmd-info.org\/pl\/knowledge-base\/lgmd-milestones-a-decade-of-difference\/","title":{"rendered":"LGMD Milestones &#8211; Over a Decade of Difference"},"content":{"rendered":"<p><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-margin-top:40px;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:1456px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-0 fusion_builder_column_1_1 1_1 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:100%;--awb-margin-top-large:0px;--awb-spacing-right-large:1.92%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:1.92%;--awb-width-medium:100%;--awb-order-medium:0;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-1 fusion-sep-none fusion-title-text fusion-title-size-four\"><h4 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"margin:0;--fontSize:22;--minFontSize:22;line-height:var(--awb-custom_typography_9-line-height);\">Explore over a decade of impactful milestones in the fight against Limb-Girdle Muscular Dystrophy (LGMD). From groundbreaking genetic sequencing and awareness campaigns to international conferences and clinical trials, discover the significant advancements and ongoing efforts to improve the lives of those affected by LGMD.<\/h4><\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-2 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-padding-top:40px;--awb-padding-bottom:0px;--awb-padding-top-small:0px;--awb-background-color:#ffffff;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-justify-content-center fusion-flex-content-wrap\" style=\"max-width:1456px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-1 awb-sticky awb-sticky-medium awb-sticky-large fusion_builder_column_1_5 1_5 fusion-flex-column fusion-animated\" style=\"--awb-bg-size:cover;--awb-width-large:20%;--awb-margin-top-large:30px;--awb-spacing-right-large:9.6%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:9.6%;--awb-width-medium:20%;--awb-order-medium:0;--awb-margin-top-medium:30px;--awb-spacing-right-medium:9.6%;--awb-spacing-left-medium:9.6%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:30px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:80px;\" data-animationtype=\"fadeInLeft\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-2 fusion-sep-none fusion-title-text fusion-title-size-two\" style=\"--awb-text-color:var(--awb-color5);--awb-margin-bottom:0px;\"><h2 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"font-family:&quot;Arvo&quot;;font-style:normal;font-weight:700;margin:0;text-transform:var(--awb-typography1-text-transform);--fontSize:38;line-height:var(--awb-typography3-line-height);\">2014<\/h2><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-2 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-no-small-visibility fusion-animated\" style=\"--awb-padding-top:60px;--awb-padding-bottom:60px;--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:2px;--awb-border-style:solid;--awb-width-large:10%;--awb-margin-top-large:50px;--awb-spacing-right-large:0%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:19.2%;--awb-width-medium:10%;--awb-order-medium:0;--awb-spacing-right-medium:0%;--awb-spacing-left-medium:19.2%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:0px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:130px;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:#ffffff;border-color:#ffffff;border-top-width:4px;\"><\/div><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-3 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-flex-align-self-stretch fusion-no-small-visibility fusion-animated\" style=\"--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:0;--awb-border-right:2px;--awb-border-style:solid;--awb-width-large:4%;--awb-margin-top-large:50px;--awb-spacing-right-large:72%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:-96%;--awb-width-medium:4%;--awb-order-medium:0;--awb-spacing-right-medium:72%;--awb-spacing-left-medium:-96%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-4 fusion-flex-column fusion-animated\" style=\"--awb-padding-top:50px;--awb-padding-bottom:50px;--awb-padding-left:40px;--awb-bg-size:cover;--awb-width-large:50%;--awb-margin-top-large:0px;--awb-spacing-right-large:3.84%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:3.84%;--awb-width-medium:50%;--awb-order-medium:0;--awb-spacing-right-medium:3.84%;--awb-spacing-left-medium:3.84%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeInUp\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-text fusion-text-1\"><p>W 2014 r. bezp\u0142atne <strong>Sekwencjonowanie genetyczne nowej generacji<\/strong> dla LGMD (35 gen\u00f3w) zosta\u0142 udost\u0119pniony ameryka\u0144skim pacjentom w ramach programu rzecznictwa LGMD, co zaowocowa\u0142o tysi\u0105cami bezp\u0142atnych test\u00f3w i diagnoz genetycznych.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-1 hover-type-none\"><img decoding=\"async\" width=\"1920\" height=\"1080\" alt=\"2014 Website\" title=\"2014 Strona internetowa\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-Website.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-Website.jpg\" class=\"lazyload img-responsive wp-image-8379\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271920%27%20height%3D%271080%27%20viewBox%3D%270%200%201920%201080%27%3E%3Crect%20width%3D%271920%27%20height%3D%271080%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-Website-200x113.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-Website-400x225.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-Website-600x338.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-Website-800x450.jpg 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-Website-1200x675.jpg 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-Website.jpg 1920w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1920px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-2\"><p><strong>LGMD-Info.org,<\/strong> w <strong>\"Centrum informacji dla spo\u0142eczno\u015bci LGMD\"<\/strong> zosta\u0142 utworzony.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-2 hover-type-none\"><img decoding=\"async\" width=\"1800\" height=\"1129\" alt=\"2014 Limegreen New\" title=\"2014 Limegreen New\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-LimeGreen-new.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-LimeGreen-new.jpg\" class=\"lazyload img-responsive wp-image-8471\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271800%27%20height%3D%271129%27%20viewBox%3D%270%200%201800%201129%27%3E%3Crect%20width%3D%271800%27%20height%3D%271129%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-LimeGreen-new-200x125.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-LimeGreen-new-400x251.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-LimeGreen-new-600x376.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-LimeGreen-new-800x502.jpg 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-LimeGreen-new-1200x753.jpg 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-LimeGreen-new.jpg 1800w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1800px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-3\"><p>The <strong>Lime Green dla LGMD<\/strong> wprowadzono kampani\u0119 u\u015bwiadamiaj\u0105c\u0105 i nadal jest to nasz charakterystyczny kolor.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-3 hover-type-none\"><img decoding=\"async\" width=\"300\" height=\"150\" alt=\"2014 Cos2\" title=\"2014 Cos2\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-cos2.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-cos2.png\" class=\"lazyload img-responsive wp-image-8472\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27150%27%20viewBox%3D%270%200%20300%20150%27%3E%3Crect%20width%3D%27300%27%20height%3D%27150%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-cos2-200x100.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2014-cos2.png 300w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 300px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-4\"><p>The <strong>Badanie wynik\u00f3w klinicznych dla dysferlinopatii<\/strong> (COS), co stanowi\u0142o znacz\u0105cy mi\u0119dzynarodowy wysi\u0142ek na rzecz zrozumienia tej choroby.<\/p>\n<\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-3 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-padding-top:40px;--awb-padding-bottom:0px;--awb-padding-top-small:0px;--awb-background-color:#ffffff;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-justify-content-center fusion-flex-content-wrap\" style=\"max-width:1456px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-5 awb-sticky awb-sticky-medium awb-sticky-large fusion_builder_column_1_5 1_5 fusion-flex-column fusion-animated\" style=\"--awb-bg-size:cover;--awb-width-large:20%;--awb-margin-top-large:30px;--awb-spacing-right-large:9.6%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:9.6%;--awb-width-medium:20%;--awb-order-medium:0;--awb-margin-top-medium:30px;--awb-spacing-right-medium:9.6%;--awb-spacing-left-medium:9.6%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:30px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:80px;\" data-animationtype=\"fadeInLeft\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-3 fusion-sep-none fusion-title-text fusion-title-size-two\" style=\"--awb-text-color:var(--awb-color5);--awb-margin-bottom:0px;\"><h2 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"font-family:&quot;Arvo&quot;;font-style:normal;font-weight:700;margin:0;text-transform:var(--awb-typography1-text-transform);--fontSize:38;line-height:var(--awb-typography3-line-height);\">2015<\/h2><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-6 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-no-small-visibility fusion-animated\" style=\"--awb-padding-top:60px;--awb-padding-bottom:60px;--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:2px;--awb-border-style:solid;--awb-width-large:10%;--awb-margin-top-large:50px;--awb-spacing-right-large:0%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:19.2%;--awb-width-medium:10%;--awb-order-medium:0;--awb-spacing-right-medium:0%;--awb-spacing-left-medium:19.2%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:0px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:130px;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:#ffffff;border-color:#ffffff;border-top-width:4px;\"><\/div><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-7 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-flex-align-self-stretch fusion-no-small-visibility fusion-animated\" style=\"--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:0;--awb-border-right:2px;--awb-border-style:solid;--awb-width-large:4%;--awb-margin-top-large:50px;--awb-spacing-right-large:72%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:-96%;--awb-width-medium:4%;--awb-order-medium:0;--awb-spacing-right-medium:72%;--awb-spacing-left-medium:-96%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-8 fusion-flex-column fusion-animated\" style=\"--awb-padding-top:50px;--awb-padding-bottom:50px;--awb-padding-left:40px;--awb-bg-size:cover;--awb-width-large:50%;--awb-margin-top-large:0px;--awb-spacing-right-large:3.84%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:3.84%;--awb-width-medium:50%;--awb-order-medium:0;--awb-spacing-right-medium:3.84%;--awb-spacing-left-medium:3.84%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeInUp\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-max-width:400px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-4 hover-type-none\"><img decoding=\"async\" width=\"1280\" height=\"720\" alt=\"2015awarenessday\" title=\"2015poniedzia\u0142ek\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015AwarenessDay-1.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015AwarenessDay-1.png\" class=\"lazyload img-responsive wp-image-8505\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271280%27%20height%3D%27720%27%20viewBox%3D%270%200%201280%20720%27%3E%3Crect%20width%3D%271280%27%20height%3D%27720%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015AwarenessDay-1-200x113.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015AwarenessDay-1-400x225.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015AwarenessDay-1-600x338.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015AwarenessDay-1-800x450.png 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015AwarenessDay-1-1200x675.png 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015AwarenessDay-1.png 1280w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1280px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-5\"><p>Pierwszy <a href=\"https:\/\/www.lgmd-info.org\/pl\/awareness-day\/\"><strong>Dzie\u0144 \u015awiadomo\u015bci LGMD<\/strong><\/a> obchodzony by\u0142 30 wrze\u015bnia 2015 roku.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"awb-gallery-wrapper awb-gallery-wrapper-1 button-span-no\" style=\"--more-btn-alignment:center;margin-bottom:20px;\"><div style=\"margin:-5px;--awb-bordersize:0px;--awb-columns-medium:25%;--awb-columns-small:25%;\" class=\"fusion-gallery fusion-gallery-container fusion-grid-4 fusion-columns-total-4 fusion-gallery-layout-grid fusion-gallery-1\"><div style=\"padding:5px;\" class=\"fusion-grid-column fusion-gallery-column fusion-gallery-column-4 hover-type-none\"><div class=\"fusion-gallery-image\"><a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-CO-proclamation.png\" rel=\"noreferrer\" data-rel=\"iLightbox[gallery_image_1]\" class=\"fusion-lightbox\" target=\"_self\"><img decoding=\"async\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-CO-proclamation.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-CO-proclamation.png\" width=\"546\" height=\"903\" alt=\"2015 Co Proclamation\" title=\"Proklamacja Co 2015\" aria-label=\"Proklamacja Co 2015\" class=\"lazyload img-responsive wp-image-8474\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27546%27%20height%3D%27903%27%20viewBox%3D%270%200%20546%20903%27%3E%3Crect%20width%3D%27546%27%20height%3D%27903%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-CO-proclamation-200x331.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-CO-proclamation-400x662.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-CO-proclamation.png 546w\" data-sizes=\"auto\" data-orig-sizes=\"(min-width: 2200px) 100vw, (min-width: 856px) 346px, (min-width: 784px) 462px, (min-width: 712px) 693px, (min-width: 640px) 712px, \" \/><\/a><\/div><\/div><div style=\"padding:5px;\" class=\"fusion-grid-column fusion-gallery-column fusion-gallery-column-4 hover-type-none\"><div class=\"fusion-gallery-image\"><a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-MO-proclamation.jpg\" rel=\"noreferrer\" data-rel=\"iLightbox[gallery_image_1]\" class=\"fusion-lightbox\" target=\"_self\"><img decoding=\"async\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-MO-proclamation.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-MO-proclamation.jpg\" width=\"618\" height=\"800\" alt=\"2015 Mo Proclamation\" title=\"Proklamacja Mo z 2015 r.\" aria-label=\"Proklamacja Mo z 2015 r.\" class=\"lazyload img-responsive wp-image-8475\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27618%27%20height%3D%27800%27%20viewBox%3D%270%200%20618%20800%27%3E%3Crect%20width%3D%27618%27%20height%3D%27800%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-MO-proclamation-200x259.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-MO-proclamation-400x518.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-MO-proclamation-600x777.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-MO-proclamation.jpg 618w\" data-sizes=\"auto\" data-orig-sizes=\"(min-width: 2200px) 100vw, (min-width: 856px) 346px, (min-width: 784px) 462px, (min-width: 712px) 693px, (min-width: 640px) 712px, \" \/><\/a><\/div><\/div><div style=\"padding:5px;\" class=\"fusion-grid-column fusion-gallery-column fusion-gallery-column-4 hover-type-none\"><div class=\"fusion-gallery-image\"><a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-WA-proclamation.jpg\" rel=\"noreferrer\" data-rel=\"iLightbox[gallery_image_1]\" class=\"fusion-lightbox\" target=\"_self\"><img decoding=\"async\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-WA-proclamation.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-WA-proclamation.jpg\" width=\"499\" height=\"619\" alt=\"2015 Wa Proclamation\" title=\"Proklamacja Wa 2015\" aria-label=\"Proklamacja Wa 2015\" class=\"lazyload img-responsive wp-image-8476\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27499%27%20height%3D%27619%27%20viewBox%3D%270%200%20499%20619%27%3E%3Crect%20width%3D%27499%27%20height%3D%27619%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-WA-proclamation-200x248.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-WA-proclamation-400x496.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-WA-proclamation.jpg 499w\" data-sizes=\"auto\" data-orig-sizes=\"(min-width: 2200px) 100vw, (min-width: 856px) 346px, (min-width: 784px) 462px, (min-width: 712px) 693px, (min-width: 640px) 712px, \" \/><\/a><\/div><\/div><div style=\"padding:5px;\" class=\"fusion-grid-column fusion-gallery-column fusion-gallery-column-4 hover-type-none\"><div class=\"fusion-gallery-image\"><a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-WI-proclamation.jpg\" rel=\"noreferrer\" data-rel=\"iLightbox[gallery_image_1]\" class=\"fusion-lightbox\" target=\"_self\"><img decoding=\"async\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-WI-proclamation.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-WI-proclamation.jpg\" width=\"738\" height=\"1211\" alt=\"2015 Wi Proclamation\" title=\"2015 Proklamacja Wi\" aria-label=\"2015 Proklamacja Wi\" class=\"lazyload img-responsive wp-image-8477\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27738%27%20height%3D%271211%27%20viewBox%3D%270%200%20738%201211%27%3E%3Crect%20width%3D%27738%27%20height%3D%271211%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-WI-proclamation-200x328.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-WI-proclamation-400x656.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-WI-proclamation-600x985.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2015-WI-proclamation.jpg 738w\" data-sizes=\"auto\" data-orig-sizes=\"(min-width: 2200px) 100vw, (min-width: 856px) 346px, (min-width: 784px) 462px, (min-width: 712px) 693px, (min-width: 640px) 712px, \" \/><\/a><\/div><\/div><div class=\"clearfix\"><\/div><\/div><\/div><div class=\"fusion-text fusion-text-6\"><p>Pierwszy <strong>proklamacje pa\u0144stwowe<\/strong> og\u0142oszono 30 wrze\u015bnia Dniem \u015awiadomo\u015bci Dystrofii Mi\u0119\u015bniowej Ko\u0144czyn w Wisconsin, Waszyngtonie, Missouri i Kolorado.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-max-width:400px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-5 hover-type-none\"><img decoding=\"async\" width=\"392\" height=\"128\" alt=\"Jainfoundation\" title=\"Fundacja Jain\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/JainFoundation.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/JainFoundation.png\" class=\"lazyload img-responsive wp-image-8513\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27392%27%20height%3D%27128%27%20viewBox%3D%270%200%20392%20128%27%3E%3Crect%20width%3D%27392%27%20height%3D%27128%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/JainFoundation-200x65.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/JainFoundation.png 392w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 392px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-7\"><p>The <strong>Konferencja naukowa Dysferlin<\/strong> odby\u0142a si\u0119 w Toronto w Kanadzie, gromadz\u0105c naukowc\u00f3w, klinicyst\u00f3w i ekspert\u00f3w bran\u017cowych, aby podzieli\u0107 si\u0119 spostrze\u017ceniami i post\u0119pami w badaniach i leczeniu dysferlinopatii, formy dystrofii mi\u0119\u015bniowej ko\u0144czyn dolnych.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-8\"><p>The <strong>Konferencja 2B Empowered Patient<\/strong> odby\u0142a si\u0119 w Dallas w Teksasie, zapewniaj\u0105c platform\u0119 dla pacjent\u00f3w z dystrofi\u0105 mi\u0119\u015bniow\u0105 ko\u0144czyn dolnych do nawi\u0105zywania kontakt\u00f3w, dzielenia si\u0119 do\u015bwiadczeniami i zdobywania cennych informacji od ekspert\u00f3w w tej dziedzinie.<\/p>\n<\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-4 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-padding-top:40px;--awb-padding-bottom:0px;--awb-padding-top-small:0px;--awb-background-color:#ffffff;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-justify-content-center fusion-flex-content-wrap\" style=\"max-width:1456px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-9 awb-sticky awb-sticky-medium awb-sticky-large fusion_builder_column_1_5 1_5 fusion-flex-column fusion-animated\" style=\"--awb-bg-size:cover;--awb-width-large:20%;--awb-margin-top-large:30px;--awb-spacing-right-large:9.6%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:9.6%;--awb-width-medium:20%;--awb-order-medium:0;--awb-margin-top-medium:30px;--awb-spacing-right-medium:9.6%;--awb-spacing-left-medium:9.6%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:30px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:80px;\" data-animationtype=\"fadeInLeft\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-4 fusion-sep-none fusion-title-text fusion-title-size-two\" style=\"--awb-text-color:var(--awb-color5);--awb-margin-bottom:0px;\"><h2 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"font-family:&quot;Arvo&quot;;font-style:normal;font-weight:700;margin:0;text-transform:var(--awb-typography1-text-transform);--fontSize:38;line-height:var(--awb-typography3-line-height);\">2016<\/h2><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-10 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-no-small-visibility fusion-animated\" style=\"--awb-padding-top:60px;--awb-padding-bottom:60px;--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:2px;--awb-border-style:solid;--awb-width-large:10%;--awb-margin-top-large:50px;--awb-spacing-right-large:0%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:19.2%;--awb-width-medium:10%;--awb-order-medium:0;--awb-spacing-right-medium:0%;--awb-spacing-left-medium:19.2%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:0px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:130px;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:#ffffff;border-color:#ffffff;border-top-width:4px;\"><\/div><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-11 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-flex-align-self-stretch fusion-no-small-visibility fusion-animated\" style=\"--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:0;--awb-border-right:2px;--awb-border-style:solid;--awb-width-large:4%;--awb-margin-top-large:50px;--awb-spacing-right-large:72%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:-96%;--awb-width-medium:4%;--awb-order-medium:0;--awb-spacing-right-medium:72%;--awb-spacing-left-medium:-96%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-12 fusion-flex-column fusion-animated\" style=\"--awb-padding-top:50px;--awb-padding-bottom:50px;--awb-padding-left:40px;--awb-bg-size:cover;--awb-width-large:50%;--awb-margin-top-large:0px;--awb-spacing-right-large:3.84%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:3.84%;--awb-width-medium:50%;--awb-order-medium:0;--awb-spacing-right-medium:3.84%;--awb-spacing-left-medium:3.84%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeInUp\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-6 hover-type-none\"><img decoding=\"async\" width=\"762\" height=\"605\" alt=\"2016 Enmc\" title=\"2016 Enmc\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2016-ENMC.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2016-ENMC.png\" class=\"lazyload img-responsive wp-image-8392\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27762%27%20height%3D%27605%27%20viewBox%3D%270%200%20762%20605%27%3E%3Crect%20width%3D%27762%27%20height%3D%27605%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2016-ENMC-200x159.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2016-ENMC-400x318.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2016-ENMC-600x476.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2016-ENMC.png 762w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 762px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-9\"><p>W 2016 r, <strong>219. mi\u0119dzynarodowe warsztaty ENMC na temat titinopatii:<\/strong> Mi\u0119dzynarodowa baza danych mutacji i fenotyp\u00f3w titiny odby\u0142a si\u0119 w Heemskerk w Holandii.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-max-width:500px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-7 hover-type-none\"><img decoding=\"async\" width=\"2560\" height=\"1279\" alt=\"2016 Cropped Lgmd2i Hi Res Scaled 2\" title=\"2016 Cropped Lgmd2i Hi Res Scaled 2\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2016-cropped-lgmd2i_hi-res-scaled-2.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2016-cropped-lgmd2i_hi-res-scaled-2.jpg\" class=\"lazyload img-responsive wp-image-8482\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%272560%27%20height%3D%271279%27%20viewBox%3D%270%200%202560%201279%27%3E%3Crect%20width%3D%272560%27%20height%3D%271279%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2016-cropped-lgmd2i_hi-res-scaled-2-200x100.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2016-cropped-lgmd2i_hi-res-scaled-2-400x200.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2016-cropped-lgmd2i_hi-res-scaled-2-600x300.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2016-cropped-lgmd2i_hi-res-scaled-2-800x400.jpg 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2016-cropped-lgmd2i_hi-res-scaled-2-1200x600.jpg 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2016-cropped-lgmd2i_hi-res-scaled-2.jpg 2560w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 2560px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-10\"><p>The <strong>Fundacja Samanthy J. Brazzo<\/strong> rebranding na <a href=\"https:\/\/curelgmd2i.com\/\" target=\"_blank\" rel=\"noopener\"><strong>CureLGMD2i<\/strong><\/a>. Zmiana ta odzwierciedla\u0142a skupienie si\u0119 fundacji na znalezieniu lekarstwa na dystrofi\u0119 mi\u0119\u015bniow\u0105 ko\u0144czyn typu 2i (LGMD2i).<\/p>\n<\/div><div class=\"fusion-text fusion-text-11\"><p>CureLGMD2i i LGMD2i Research Fund wspar\u0142y pierwsze w historii badanie kliniczne LGMD2I\/R9, zatytu\u0142owane <strong>\"Pr\u00f3ba PF-06252616 u uczestnik\u00f3w ambulatoryjnych z LGMD2I,\"<\/strong> prowadzony przez dr Kathryn Wagner.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-8 hover-type-none\"><img decoding=\"async\" width=\"373\" height=\"135\" alt=\"2016 Dysferlinregistrylogo\" title=\"2016 Dysferlinregistrylogo\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2016-DysferlinRegistryLogo.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2016-DysferlinRegistryLogo.png\" class=\"lazyload img-responsive wp-image-8484\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27373%27%20height%3D%27135%27%20viewBox%3D%270%200%20373%20135%27%3E%3Crect%20width%3D%27373%27%20height%3D%27135%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2016-DysferlinRegistryLogo-200x72.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2016-DysferlinRegistryLogo.png 373w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 373px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-12\"><p><strong>Rejestr dysferlin<\/strong> uruchomi\u0142a now\u0105 platform\u0119 przeznaczon\u0105 specjalnie dla pacjent\u00f3w z genetycznie potwierdzon\u0105 dysferlinopati\u0105.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-13\"><p><strong>Podw\u00f3jna wektorowa terapia genowa<\/strong> dla dysferlinopatii, w szczeg\u00f3lno\u015bci ukierunkowanej na dystrofi\u0119 mi\u0119\u015bniow\u0105 typu ko\u0144sko-szpotawego, otrzyma\u0142 zgod\u0119 FDA na z\u0142o\u017cenie wniosku o nowy lek badawczy (IND).<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-14\"><p>Drugi <strong>Konferencja 2B Empowered Patient<\/strong> odby\u0142a si\u0119 w Dallas w Teksasie.<\/p>\n<\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-5 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-padding-top:40px;--awb-padding-bottom:0px;--awb-padding-top-small:0px;--awb-background-color:#ffffff;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-justify-content-center fusion-flex-content-wrap\" style=\"max-width:1456px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-13 awb-sticky awb-sticky-medium awb-sticky-large fusion_builder_column_1_5 1_5 fusion-flex-column fusion-animated\" style=\"--awb-bg-size:cover;--awb-width-large:20%;--awb-margin-top-large:30px;--awb-spacing-right-large:9.6%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:9.6%;--awb-width-medium:20%;--awb-order-medium:0;--awb-margin-top-medium:30px;--awb-spacing-right-medium:9.6%;--awb-spacing-left-medium:9.6%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:30px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:80px;\" data-animationtype=\"fadeInLeft\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-5 fusion-sep-none fusion-title-text fusion-title-size-two\" style=\"--awb-text-color:var(--awb-color5);--awb-margin-bottom:0px;\"><h2 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"font-family:&quot;Arvo&quot;;font-style:normal;font-weight:700;margin:0;text-transform:var(--awb-typography1-text-transform);--fontSize:38;line-height:var(--awb-typography3-line-height);\">2017<\/h2><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-14 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-no-small-visibility fusion-animated\" style=\"--awb-padding-top:60px;--awb-padding-bottom:60px;--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:2px;--awb-border-style:solid;--awb-width-large:10%;--awb-margin-top-large:50px;--awb-spacing-right-large:0%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:19.2%;--awb-width-medium:10%;--awb-order-medium:0;--awb-spacing-right-medium:0%;--awb-spacing-left-medium:19.2%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:0px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:130px;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:#ffffff;border-color:#ffffff;border-top-width:4px;\"><\/div><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-15 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-flex-align-self-stretch fusion-no-small-visibility fusion-animated\" style=\"--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:0;--awb-border-right:2px;--awb-border-style:solid;--awb-width-large:4%;--awb-margin-top-large:50px;--awb-spacing-right-large:72%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:-96%;--awb-width-medium:4%;--awb-order-medium:0;--awb-spacing-right-medium:72%;--awb-spacing-left-medium:-96%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-16 fusion-flex-column fusion-animated\" style=\"--awb-padding-top:50px;--awb-padding-bottom:50px;--awb-padding-left:40px;--awb-bg-size:cover;--awb-width-large:50%;--awb-margin-top-large:0px;--awb-spacing-right-large:3.84%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:3.84%;--awb-width-medium:50%;--awb-order-medium:0;--awb-spacing-right-medium:3.84%;--awb-spacing-left-medium:3.84%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeInUp\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-max-width:500px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-9 hover-type-none\"><img decoding=\"async\" width=\"1440\" height=\"592\" alt=\"2017myonexuslogo\" title=\"2017myonexuslogo\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2017MyonexusLogo.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2017MyonexusLogo.jpg\" class=\"lazyload img-responsive wp-image-8398\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271440%27%20height%3D%27592%27%20viewBox%3D%270%200%201440%20592%27%3E%3Crect%20width%3D%271440%27%20height%3D%27592%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2017MyonexusLogo-200x82.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2017MyonexusLogo-400x164.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2017MyonexusLogo-600x247.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2017MyonexusLogo-800x329.jpg 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2017MyonexusLogo-1200x493.jpg 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2017MyonexusLogo.jpg 1440w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1440px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-15\"><p><strong>Myonexus Therapeutics<\/strong> zosta\u0142a za\u0142o\u017cona w 2017 r. w celu opracowania terapii genowych do leczenia pi\u0119ciu podtyp\u00f3w dystrofii mi\u0119\u015bniowej ko\u0144czyn dolnych (LGMD): LGMD2B\/R2, LGMD2C\/R5, LGMD2D\/R5, LGMD2E\/R4 i LGMD2L\/R12. Ta znajduj\u0105ca si\u0119 w fazie klinicznej firma biotechnologiczna, we wsp\u00f3\u0142pracy z Nationwide Children's Hospital, koncentruje si\u0119 na tworzeniu pierwszych w historii terapii naprawczych dla tych form LGMD, wykorzystuj\u0105c innowacyjn\u0105 platform\u0119 terapii genowej opart\u0105 na systemie wektorowym AAVrh.74 (<a href=\"https:\/\/investorrelations.sarepta.com\/news-releases\/news-release-details\/sarepta-therapeutics-announces-partnership-myonexus-therapeutics\" target=\"_blank\" rel=\"noopener\">Sarepta Therapeutics<\/a>) (<a href=\"https:\/\/musculardystrophynews.com\/news\/myonexus-launches-development-gene-therapies-targeting-limb-girdle-muscular-dystrophies\/\" target=\"_blank\" rel=\"noopener\">Wiadomo\u015bci o dystrofii mi\u0119\u015bniowej<\/a>) (<a href=\"https:\/\/www.biospace.com\/article\/releases\/myonexus-therapeutics-announces-accelerated-acquisition-by-sarepta-therapeutics\/\" target=\"_blank\" rel=\"noopener\">BioSpace<\/a>).<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-16\"><p>Podczas 229. mi\u0119dzynarodowych warsztat\u00f3w ENMC, kt\u00f3re odby\u0142y si\u0119 w Naarden w Holandii w dniach 17-19 marca 2017 r., opracowano <strong>nowa nomenklatura i system klasyfikacji dystrofii mi\u0119\u015bniowych obr\u0119czy ko\u0144czyn (LGMD)<\/strong>. Zmiana by\u0142a konieczna, aby zaktualizowa\u0107 definicj\u0119 LGMD i zaj\u0105\u0107 si\u0119 kwesti\u0105 numeracji podtypu postaci recesywnej osi\u0105gaj\u0105cej Z (LGMD 2Z). Nowy system ma na celu uczynienie LGMD bardziej odr\u0119bn\u0105 jednostk\u0105 z podobie\u0144stwami mi\u0119dzy podtypami.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-17\"><p>W 2017 r. <strong>pierwsze domi\u0119\u015bniowe (IM) badanie kliniczne dwulekowej terapii genowej dysferlinopatii<\/strong> co stanowi znacz\u0105cy post\u0119p w leczeniu tej postaci LGMD.<\/p>\n<\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-6 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-padding-top:40px;--awb-padding-bottom:0px;--awb-padding-top-small:0px;--awb-background-color:#ffffff;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-justify-content-center fusion-flex-content-wrap\" style=\"max-width:1456px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-17 awb-sticky awb-sticky-medium awb-sticky-large fusion_builder_column_1_5 1_5 fusion-flex-column fusion-animated\" style=\"--awb-bg-size:cover;--awb-width-large:20%;--awb-margin-top-large:30px;--awb-spacing-right-large:9.6%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:9.6%;--awb-width-medium:20%;--awb-order-medium:0;--awb-margin-top-medium:30px;--awb-spacing-right-medium:9.6%;--awb-spacing-left-medium:9.6%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:30px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:80px;\" data-animationtype=\"fadeInLeft\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-6 fusion-sep-none fusion-title-text fusion-title-size-two\" style=\"--awb-text-color:var(--awb-color5);--awb-margin-bottom:0px;\"><h2 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"font-family:&quot;Arvo&quot;;font-style:normal;font-weight:700;margin:0;text-transform:var(--awb-typography1-text-transform);--fontSize:38;line-height:var(--awb-typography3-line-height);\">2018<\/h2><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-18 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-no-small-visibility fusion-animated\" style=\"--awb-padding-top:60px;--awb-padding-bottom:60px;--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:2px;--awb-border-style:solid;--awb-width-large:10%;--awb-margin-top-large:50px;--awb-spacing-right-large:0%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:19.2%;--awb-width-medium:10%;--awb-order-medium:0;--awb-spacing-right-medium:0%;--awb-spacing-left-medium:19.2%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:0px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:130px;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:#ffffff;border-color:#ffffff;border-top-width:4px;\"><\/div><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-19 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-flex-align-self-stretch fusion-no-small-visibility fusion-animated\" style=\"--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:0;--awb-border-right:2px;--awb-border-style:solid;--awb-width-large:4%;--awb-margin-top-large:50px;--awb-spacing-right-large:72%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:-96%;--awb-width-medium:4%;--awb-order-medium:0;--awb-spacing-right-medium:72%;--awb-spacing-left-medium:-96%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-20 fusion-flex-column fusion-animated\" style=\"--awb-padding-top:50px;--awb-padding-bottom:50px;--awb-padding-left:40px;--awb-bg-size:cover;--awb-width-large:50%;--awb-margin-top-large:0px;--awb-spacing-right-large:3.84%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:3.84%;--awb-width-medium:50%;--awb-order-medium:0;--awb-spacing-right-medium:3.84%;--awb-spacing-left-medium:3.84%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeInUp\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-10 hover-type-none\"><img decoding=\"async\" width=\"943\" height=\"1037\" alt=\"2018grasp\" title=\"2018grasp\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018Grasp.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018Grasp.jpg\" class=\"lazyload img-responsive wp-image-8401\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27943%27%20height%3D%271037%27%20viewBox%3D%270%200%20943%201037%27%3E%3Crect%20width%3D%27943%27%20height%3D%271037%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018Grasp-200x220.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018Grasp-400x440.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018Grasp-600x660.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018Grasp-800x880.jpg 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018Grasp.jpg 943w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 943px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-18\"><p>W 2018 r. <strong>G<\/strong>enetyczny <strong>R<\/strong>i <strong>A<\/strong>oceny <strong>S<\/strong>olewanie <strong>P<\/strong>henotypy w LGMD <strong>(GRASP-LGMD)<\/strong> Konsorcjum zosta\u0142o utworzone w celu przyspieszenia rozwoju terapii w LGMD.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-11 hover-type-none\"><img decoding=\"async\" width=\"744\" height=\"248\" alt=\"2018 Lgmd2l Logo\" title=\"2018 Logo Lgmd2l\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018-LGMD2L-Logo.webp\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018-LGMD2L-Logo.webp\" class=\"lazyload img-responsive wp-image-8488\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27744%27%20height%3D%27248%27%20viewBox%3D%270%200%20744%20248%27%3E%3Crect%20width%3D%27744%27%20height%3D%27248%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018-LGMD2L-Logo-200x67.webp 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018-LGMD2L-Logo-300x100.webp 300w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018-LGMD2L-Logo-400x133.webp 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018-LGMD2L-Logo-600x200.webp 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018-LGMD2L-Logo.webp 744w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 744px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-19\"><p>The <a href=\"https:\/\/www.lgmd2l-foundation.org\/\" target=\"_blank\" rel=\"noopener\"><strong>Fundacja LGMD2L<\/strong><\/a> zosta\u0142 ustanowiony.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-12 hover-type-none\"><img decoding=\"async\" width=\"400\" height=\"400\" alt=\"2018 Ccc Slide1 400x400\" title=\"2018 Ccc Slide1 400\u00d7400\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018-CCC-Slide1_400x400.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018-CCC-Slide1_400x400.png\" class=\"lazyload img-responsive wp-image-8490\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27400%27%20height%3D%27400%27%20viewBox%3D%270%200%20400%20400%27%3E%3Crect%20width%3D%27400%27%20height%3D%27400%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018-CCC-Slide1_400x400-200x200.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018-CCC-Slide1_400x400.png 400w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 400px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-20\"><p>The <a href=\"https:\/\/www.curecalpain3.org\/\" target=\"_blank\" rel=\"noopener\"><strong>Koalicja na rzecz leczenia kalpainy 3<\/strong><\/a> og\u0142osi\u0142 ich <strong>Inicjatywa na rzecz terapii genowej<\/strong>kt\u00f3rego celem jest przyspieszenie rozwoju terapii genowych w leczeniu dystrofii mi\u0119\u015bniowej ko\u0144czyn typu 2A\/R1 (LGMD2A\/R1).<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-13 hover-type-none\"><img decoding=\"async\" width=\"1080\" height=\"1080\" alt=\"2018lgmd2a R1\" title=\"2018lgmd2a R1\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018LGMD2A-R1.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018LGMD2A-R1.png\" class=\"lazyload img-responsive wp-image-8402\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271080%27%20height%3D%271080%27%20viewBox%3D%270%200%201080%201080%27%3E%3Crect%20width%3D%271080%27%20height%3D%271080%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018LGMD2A-R1-200x200.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018LGMD2A-R1-400x400.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018LGMD2A-R1-600x600.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018LGMD2A-R1-800x800.png 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018LGMD2A-R1.png 1080w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1080px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-21\"><p>The <strong>Konferencja naukowa LGMD2A\/R1<\/strong> odby\u0142a si\u0119 w Arlington w stanie Wirginia, gromadz\u0105c ekspert\u00f3w i badaczy w celu om\u00f3wienia najnowszych osi\u0105gni\u0119\u0107 i strategii w walce z dystrofi\u0105 mi\u0119\u015bniow\u0105 ko\u0144czyn typu 2A\/R1.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-max-width:500px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-14 hover-type-none\"><img decoding=\"async\" width=\"1200\" height=\"515\" alt=\"2018 Lgmd1d Logo\" title=\"2018 Logo Lgmd1d\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018-LGMD1D-logo.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018-LGMD1D-logo.png\" class=\"lazyload img-responsive wp-image-8492\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271200%27%20height%3D%27515%27%20viewBox%3D%270%200%201200%20515%27%3E%3Crect%20width%3D%271200%27%20height%3D%27515%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018-LGMD1D-logo-200x86.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018-LGMD1D-logo-400x172.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018-LGMD1D-logo-600x258.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018-LGMD1D-logo-800x343.png 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2018-LGMD1D-logo.png 1200w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1200px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-22\"><p>The <a href=\"https:\/\/lgmd1d.org\/\" target=\"_blank\" rel=\"noopener\"><strong>LGMD-1D DNAJB6 Foundation<\/strong><\/a> zosta\u0142 ustanowiony.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-23\"><p>Firma Sarepta Therapeutics przeprowadzi\u0142a pierwsze <strong>podawanie terapii genowej na ca\u0142e cia\u0142o<\/strong> dla dystrofii mi\u0119\u015bniowej obr\u0119czy ko\u0144czyny dolnej, w szczeg\u00f3lno\u015bci ukierunkowany na gen beta-sarkoglikanu (LGMD2E).<\/p>\n<\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-7 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-padding-top:40px;--awb-padding-bottom:0px;--awb-padding-top-small:0px;--awb-background-color:#ffffff;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-justify-content-center fusion-flex-content-wrap\" style=\"max-width:1456px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-21 awb-sticky awb-sticky-medium awb-sticky-large fusion_builder_column_1_5 1_5 fusion-flex-column fusion-animated\" style=\"--awb-bg-size:cover;--awb-width-large:20%;--awb-margin-top-large:30px;--awb-spacing-right-large:9.6%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:9.6%;--awb-width-medium:20%;--awb-order-medium:0;--awb-margin-top-medium:30px;--awb-spacing-right-medium:9.6%;--awb-spacing-left-medium:9.6%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:30px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:80px;\" data-animationtype=\"fadeInLeft\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-7 fusion-sep-none fusion-title-text fusion-title-size-two\" style=\"--awb-text-color:var(--awb-color5);--awb-margin-bottom:0px;\"><h2 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"font-family:&quot;Arvo&quot;;font-style:normal;font-weight:700;margin:0;text-transform:var(--awb-typography1-text-transform);--fontSize:38;line-height:var(--awb-typography3-line-height);\">2019<\/h2><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-22 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-no-small-visibility fusion-animated\" style=\"--awb-padding-top:60px;--awb-padding-bottom:60px;--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:2px;--awb-border-style:solid;--awb-width-large:10%;--awb-margin-top-large:50px;--awb-spacing-right-large:0%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:19.2%;--awb-width-medium:10%;--awb-order-medium:0;--awb-spacing-right-medium:0%;--awb-spacing-left-medium:19.2%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:0px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:130px;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:#ffffff;border-color:#ffffff;border-top-width:4px;\"><\/div><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-23 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-flex-align-self-stretch fusion-no-small-visibility fusion-animated\" style=\"--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:0;--awb-border-right:2px;--awb-border-style:solid;--awb-width-large:4%;--awb-margin-top-large:50px;--awb-spacing-right-large:72%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:-96%;--awb-width-medium:4%;--awb-order-medium:0;--awb-spacing-right-medium:72%;--awb-spacing-left-medium:-96%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-24 fusion-flex-column fusion-animated\" style=\"--awb-padding-top:50px;--awb-padding-bottom:50px;--awb-padding-left:40px;--awb-bg-size:cover;--awb-width-large:50%;--awb-margin-top-large:0px;--awb-spacing-right-large:3.84%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:3.84%;--awb-width-medium:50%;--awb-order-medium:0;--awb-spacing-right-medium:3.84%;--awb-spacing-left-medium:3.84%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeInUp\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-text fusion-text-24\"><p>W 2019 r. <strong>Mi\u0119dzynarodowy Spo\u0142eczny Komitet Doradczy LGMD (CAB)<\/strong> zosta\u0142a utworzona, aby zapewni\u0107 jednolity g\u0142os globalnej spo\u0142eczno\u015bci chorych na dystrofi\u0119 mi\u0119\u015bniow\u0105 ko\u0144czyn dolnych i u\u0142atwi\u0107 wsp\u00f3\u0142prac\u0119 mi\u0119dzy pacjentami, badaczami i \u015bwiadczeniodawcami opieki zdrowotnej.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-15 hover-type-none\"><img decoding=\"async\" width=\"1280\" height=\"720\" alt=\"2019limeemoji\" title=\"2019limeemoji\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2019LimeEmoji.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2019LimeEmoji.jpg\" class=\"lazyload img-responsive wp-image-8495\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271280%27%20height%3D%27720%27%20viewBox%3D%270%200%201280%20720%27%3E%3Crect%20width%3D%271280%27%20height%3D%27720%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2019LimeEmoji-200x113.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2019LimeEmoji-400x225.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2019LimeEmoji-600x338.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2019LimeEmoji-800x450.jpg 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2019LimeEmoji-1200x675.jpg 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2019LimeEmoji.jpg 1280w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1280px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-25\"><p>The <strong>\"Wyzwanie LIMEmoji\"<\/strong> w celu zwi\u0119kszenia \u015bwiadomo\u015bci na temat LGMD.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-26\"><p>Rozpocz\u0119to badanie kliniczne w celu oceny <strong>otwarte badanie bezpiecze\u0144stwa i skuteczno\u015bci steryd\u00f3w podawanych raz w tygodniu<\/strong> u pacjent\u00f3w z dystrofi\u0105 mi\u0119\u015bniow\u0105 ko\u0144czyn dolnych (LGMD).<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-16 hover-type-none\"><img decoding=\"async\" width=\"1600\" height=\"434\" alt=\"2019conference\" title=\"Konferencja 2019\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2019Conference.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2019Conference.jpg\" class=\"lazyload img-responsive wp-image-8405\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271600%27%20height%3D%27434%27%20viewBox%3D%270%200%201600%20434%27%3E%3Crect%20width%3D%271600%27%20height%3D%27434%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2019Conference-200x54.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2019Conference-400x109.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2019Conference-600x163.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2019Conference-800x217.jpg 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2019Conference-1200x326.jpg 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2019Conference.jpg 1600w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1600px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-27\"><p>Pierwszy <strong>Mi\u0119dzynarodowa konferencja LGMD<\/strong> odby\u0142a si\u0119 w Chicago w stanie Illinois, gromadz\u0105c pacjent\u00f3w, rodziny, badaczy i klinicyst\u00f3w z ca\u0142ego \u015bwiata, aby dzieli\u0107 si\u0119 wiedz\u0105 i pog\u0142\u0119bia\u0107 zrozumienie i leczenie dystrofii mi\u0119\u015bniowej ko\u0144czyn dolnych (LGMD).<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-17 hover-type-none\"><img decoding=\"async\" width=\"1284\" height=\"1600\" alt=\"2109india\" title=\"2109india\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2109India.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2109India.png\" class=\"lazyload img-responsive wp-image-8406\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271284%27%20height%3D%271600%27%20viewBox%3D%270%200%201284%201600%27%3E%3Crect%20width%3D%271284%27%20height%3D%271600%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2109India-200x249.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2109India-400x498.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2109India-600x748.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2109India-800x997.png 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2109India-1200x1495.png 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2109India.png 1284w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1284px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-28\"><p>The <strong>2B Wzmocnione spotkanie z pacjentem<\/strong> odby\u0142a si\u0119 w Mumbaju w Indiach, zapewniaj\u0105c platform\u0119 dla os\u00f3b dotkni\u0119tych dystrofi\u0105 mi\u0119\u015bniow\u0105 ko\u0144czyn dolnych do nawi\u0105zywania kontakt\u00f3w, dzielenia si\u0119 do\u015bwiadczeniami i zdobywania cennych informacji od wiod\u0105cych ekspert\u00f3w w tej dziedzinie.<\/p>\n<\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-8 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-padding-top:40px;--awb-padding-bottom:0px;--awb-padding-top-small:0px;--awb-background-color:#ffffff;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-justify-content-center fusion-flex-content-wrap\" style=\"max-width:1456px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-25 awb-sticky awb-sticky-medium awb-sticky-large fusion_builder_column_1_5 1_5 fusion-flex-column fusion-animated\" style=\"--awb-bg-size:cover;--awb-width-large:20%;--awb-margin-top-large:30px;--awb-spacing-right-large:9.6%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:9.6%;--awb-width-medium:20%;--awb-order-medium:0;--awb-margin-top-medium:30px;--awb-spacing-right-medium:9.6%;--awb-spacing-left-medium:9.6%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:30px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:80px;\" data-animationtype=\"fadeInLeft\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-8 fusion-sep-none fusion-title-text fusion-title-size-two\" style=\"--awb-text-color:var(--awb-color5);--awb-margin-bottom:0px;\"><h2 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"font-family:&quot;Arvo&quot;;font-style:normal;font-weight:700;margin:0;text-transform:var(--awb-typography1-text-transform);--fontSize:38;line-height:var(--awb-typography3-line-height);\">2020<\/h2><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-26 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-no-small-visibility fusion-animated\" style=\"--awb-padding-top:60px;--awb-padding-bottom:60px;--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:2px;--awb-border-style:solid;--awb-width-large:10%;--awb-margin-top-large:50px;--awb-spacing-right-large:0%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:19.2%;--awb-width-medium:10%;--awb-order-medium:0;--awb-spacing-right-medium:0%;--awb-spacing-left-medium:19.2%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:0px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:130px;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:#ffffff;border-color:#ffffff;border-top-width:4px;\"><\/div><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-27 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-flex-align-self-stretch fusion-no-small-visibility fusion-animated\" style=\"--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:0;--awb-border-right:2px;--awb-border-style:solid;--awb-width-large:4%;--awb-margin-top-large:50px;--awb-spacing-right-large:72%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:-96%;--awb-width-medium:4%;--awb-order-medium:0;--awb-spacing-right-medium:72%;--awb-spacing-left-medium:-96%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-28 fusion-flex-column fusion-animated\" style=\"--awb-padding-top:50px;--awb-padding-bottom:50px;--awb-padding-left:40px;--awb-bg-size:cover;--awb-width-large:50%;--awb-margin-top-large:0px;--awb-spacing-right-large:3.84%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:3.84%;--awb-width-medium:50%;--awb-order-medium:0;--awb-spacing-right-medium:3.84%;--awb-spacing-left-medium:3.84%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeInUp\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-18 hover-type-none\"><img decoding=\"async\" width=\"741\" height=\"1245\" alt=\"2020laf\" title=\"2020laf\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2020LAF.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2020LAF.png\" class=\"lazyload img-responsive wp-image-8408\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27741%27%20height%3D%271245%27%20viewBox%3D%270%200%20741%201245%27%3E%3Crect%20width%3D%27741%27%20height%3D%271245%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2020LAF-200x336.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2020LAF-400x672.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2020LAF-600x1008.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2020LAF.png 741w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 741px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-29\"><p>W 2020 r. <a href=\"https:\/\/www.lgmd-info.org\/pl\/about-us\/\"><strong>Fundacja LGMD Awareness<\/strong><\/a> zosta\u0142a za\u0142o\u017cona w celu podnoszenia \u015bwiadomo\u015bci, zapewniania edukacji i wspierania wysi\u0142k\u00f3w badawczych maj\u0105cych na celu popraw\u0119 \u017cycia os\u00f3b dotkni\u0119tych dystrofi\u0105 mi\u0119\u015bniow\u0105 ko\u0144czyn dolnych (LGMD).<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-19 hover-type-none\"><img decoding=\"async\" width=\"990\" height=\"1237\" alt=\"2020girdie\" title=\"2020girdie\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2020Girdie.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2020Girdie.jpg\" class=\"lazyload img-responsive wp-image-8409\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27990%27%20height%3D%271237%27%20viewBox%3D%270%200%20990%201237%27%3E%3Crect%20width%3D%27990%27%20height%3D%271237%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2020Girdie-200x250.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2020Girdie-400x500.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2020Girdie-600x750.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2020Girdie-800x1000.jpg 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2020Girdie.jpg 990w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 990px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-30\"><p><a href=\"https:\/\/www.lgmd-info.org\/pl\/about-us\/meet-girdie\/\"><strong>Girdie, ambasador LGMD,<\/strong><\/a> zosta\u0142a przedstawiona spo\u0142eczno\u015bci LGMD.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-31\"><p>A <strong>Sesja z udzia\u0142em pacjent\u00f3w<\/strong> dla dystrofii mi\u0119\u015bniowej ko\u0144czyn dolnych (LGMD) odby\u0142o si\u0119 z udzia\u0142em FDA, daj\u0105c pacjentom i opiekunom mo\u017cliwo\u015b\u0107 podzielenia si\u0119 swoimi do\u015bwiadczeniami i podkre\u015blenia pilnej potrzeby nowych metod leczenia i terapii bezpo\u015brednio z urz\u0119dnikami regulacyjnymi.<\/p>\n<\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-9 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-padding-top:40px;--awb-padding-bottom:0px;--awb-padding-top-small:0px;--awb-background-color:#ffffff;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-justify-content-center fusion-flex-content-wrap\" style=\"max-width:1456px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-29 awb-sticky awb-sticky-medium awb-sticky-large fusion_builder_column_1_5 1_5 fusion-flex-column fusion-animated\" style=\"--awb-bg-size:cover;--awb-width-large:20%;--awb-margin-top-large:30px;--awb-spacing-right-large:9.6%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:9.6%;--awb-width-medium:20%;--awb-order-medium:0;--awb-margin-top-medium:30px;--awb-spacing-right-medium:9.6%;--awb-spacing-left-medium:9.6%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:30px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:80px;\" data-animationtype=\"fadeInLeft\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-9 fusion-sep-none fusion-title-text fusion-title-size-two\" style=\"--awb-text-color:var(--awb-color5);--awb-margin-bottom:0px;\"><h2 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"font-family:&quot;Arvo&quot;;font-style:normal;font-weight:700;margin:0;text-transform:var(--awb-typography1-text-transform);--fontSize:38;line-height:var(--awb-typography3-line-height);\">2021<\/h2><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-30 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-no-small-visibility fusion-animated\" style=\"--awb-padding-top:60px;--awb-padding-bottom:60px;--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:2px;--awb-border-style:solid;--awb-width-large:10%;--awb-margin-top-large:50px;--awb-spacing-right-large:0%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:19.2%;--awb-width-medium:10%;--awb-order-medium:0;--awb-spacing-right-medium:0%;--awb-spacing-left-medium:19.2%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:0px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:130px;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:#ffffff;border-color:#ffffff;border-top-width:4px;\"><\/div><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-31 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-flex-align-self-stretch fusion-no-small-visibility fusion-animated\" style=\"--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:0;--awb-border-right:2px;--awb-border-style:solid;--awb-width-large:4%;--awb-margin-top-large:50px;--awb-spacing-right-large:72%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:-96%;--awb-width-medium:4%;--awb-order-medium:0;--awb-spacing-right-medium:72%;--awb-spacing-left-medium:-96%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-32 fusion-flex-column fusion-animated\" style=\"--awb-padding-top:50px;--awb-padding-bottom:50px;--awb-padding-left:40px;--awb-bg-size:cover;--awb-width-large:50%;--awb-margin-top-large:0px;--awb-spacing-right-large:3.84%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:3.84%;--awb-width-medium:50%;--awb-order-medium:0;--awb-spacing-right-medium:3.84%;--awb-spacing-left-medium:3.84%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeInUp\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-20 hover-type-none\"><img decoding=\"async\" width=\"1530\" height=\"1980\" alt=\"2021lgmdnews\" title=\"2021lgmdnews\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2021LGMDNews.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2021LGMDNews.png\" class=\"lazyload img-responsive wp-image-8426\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271530%27%20height%3D%271980%27%20viewBox%3D%270%200%201530%201980%27%3E%3Crect%20width%3D%271530%27%20height%3D%271980%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2021LGMDNews-200x259.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2021LGMDNews-400x518.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2021LGMDNews-600x776.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2021LGMDNews-800x1035.png 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2021LGMDNews-1200x1553.png 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2021LGMDNews.png 1530w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1530px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-32\"><p>Pierwszy numer <a href=\"https:\/\/thespeakfoundation.com\/limb-girdle-magazine-1\" target=\"_blank\" rel=\"noopener\"><strong><em>LGMD News<\/em> magazyn<\/strong><\/a> zosta\u0142 opublikowany (vol 1\/issue 1) w 2021 roku.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-33\"><p>Pierwszy <strong>\"Wirtualna\" Mi\u0119dzynarodowa Konferencja LGMD<\/strong> kt\u00f3ra umo\u017cliwi\u0142a uczestnikom z ca\u0142ego \u015bwiata nawi\u0105zanie kontaktu i zaanga\u017cowanie si\u0119 w dyskusje na temat najnowszych bada\u0144, metod leczenia i wsparcia dla os\u00f3b cierpi\u0105cych na dystrofi\u0119 mi\u0119\u015bniow\u0105 ko\u0144czyn dolnych (LGMD) pomimo wyzwa\u0144 zwi\u0105zanych z globaln\u0105 pandemi\u0105.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-21 hover-type-none\"><img decoding=\"async\" width=\"888\" height=\"1158\" alt=\"2021diagnosticcodes\" title=\"2021kody diagnostyczne\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2021DiagnosticCodes.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2021DiagnosticCodes.png\" class=\"lazyload img-responsive wp-image-8412\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27888%27%20height%3D%271158%27%20viewBox%3D%270%200%20888%201158%27%3E%3Crect%20width%3D%27888%27%20height%3D%271158%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2021DiagnosticCodes-200x261.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2021DiagnosticCodes-400x522.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2021DiagnosticCodes-600x782.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2021DiagnosticCodes-800x1043.png 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2021DiagnosticCodes.png 888w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 888px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-34\"><p><strong>Zatwierdzono dedykowane kody medyczne ICD-10<\/strong> dla kilku okre\u015blonych podtyp\u00f3w dystrofii mi\u0119\u015bniowej ko\u0144czyn dolnych (LGMD), a tak\u017ce dla nieokre\u015blonych podtyp\u00f3w, u\u0142atwiaj\u0105c lepsz\u0105 diagnoz\u0119, leczenie i \u015bledzenie choroby w systemie opieki zdrowotnej.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-35\"><p>Pierwszemu pacjentowi podano dawk\u0119 leku w badaniu klinicznym fazy 2. <strong>BBP-418 (Ribitol)<\/strong> w leczeniu dystrofii mi\u0119\u015bniowej ko\u0144czyn typu 2I\/R9 (LGMD2I\/R9), prowadzone przez BridgeBio Pharma i jej sp\u00f3\u0142k\u0119 stowarzyszon\u0105 ML Bio Solutions.<\/p>\n<\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-10 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-padding-top:40px;--awb-padding-bottom:0px;--awb-padding-top-small:0px;--awb-background-color:#ffffff;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-justify-content-center fusion-flex-content-wrap\" style=\"max-width:1456px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-33 awb-sticky awb-sticky-medium awb-sticky-large fusion_builder_column_1_5 1_5 fusion-flex-column fusion-animated\" style=\"--awb-bg-size:cover;--awb-width-large:20%;--awb-margin-top-large:30px;--awb-spacing-right-large:9.6%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:9.6%;--awb-width-medium:20%;--awb-order-medium:0;--awb-margin-top-medium:30px;--awb-spacing-right-medium:9.6%;--awb-spacing-left-medium:9.6%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:30px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:80px;\" data-animationtype=\"fadeInLeft\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-10 fusion-sep-none fusion-title-text fusion-title-size-two\" style=\"--awb-text-color:var(--awb-color5);--awb-margin-bottom:0px;\"><h2 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"font-family:&quot;Arvo&quot;;font-style:normal;font-weight:700;margin:0;text-transform:var(--awb-typography1-text-transform);--fontSize:38;line-height:var(--awb-typography3-line-height);\">2022<\/h2><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-34 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-no-small-visibility fusion-animated\" style=\"--awb-padding-top:60px;--awb-padding-bottom:60px;--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:2px;--awb-border-style:solid;--awb-width-large:10%;--awb-margin-top-large:50px;--awb-spacing-right-large:0%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:19.2%;--awb-width-medium:10%;--awb-order-medium:0;--awb-spacing-right-medium:0%;--awb-spacing-left-medium:19.2%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:0px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:130px;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:#ffffff;border-color:#ffffff;border-top-width:4px;\"><\/div><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-35 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-flex-align-self-stretch fusion-no-small-visibility fusion-animated\" style=\"--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:0;--awb-border-right:2px;--awb-border-style:solid;--awb-width-large:4%;--awb-margin-top-large:50px;--awb-spacing-right-large:72%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:-96%;--awb-width-medium:4%;--awb-order-medium:0;--awb-spacing-right-medium:72%;--awb-spacing-left-medium:-96%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-36 fusion-flex-column fusion-animated\" style=\"--awb-padding-top:50px;--awb-padding-bottom:50px;--awb-padding-left:40px;--awb-bg-size:cover;--awb-width-large:50%;--awb-margin-top-large:0px;--awb-spacing-right-large:3.84%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:3.84%;--awb-width-medium:50%;--awb-order-medium:0;--awb-spacing-right-medium:3.84%;--awb-spacing-left-medium:3.84%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeInUp\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-22 hover-type-none\"><img decoding=\"async\" width=\"1190\" height=\"282\" alt=\"Screenshot 2024 07 25 At 3.44.02\u202fpm\" title=\"Zrzut ekranu 2024 07 25 o 3.44.02 pm\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/Screenshot-2024-07-25-at-3.44.02\u202fPM.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/Screenshot-2024-07-25-at-3.44.02\u202fPM.png\" class=\"lazyload img-responsive wp-image-8518\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271190%27%20height%3D%27282%27%20viewBox%3D%270%200%201190%20282%27%3E%3Crect%20width%3D%271190%27%20height%3D%27282%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/Screenshot-2024-07-25-at-3.44.02\u202fPM-200x47.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/Screenshot-2024-07-25-at-3.44.02\u202fPM-400x95.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/Screenshot-2024-07-25-at-3.44.02\u202fPM-600x142.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/Screenshot-2024-07-25-at-3.44.02\u202fPM-800x190.png 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/Screenshot-2024-07-25-at-3.44.02\u202fPM.png 1190w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1190px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-36\"><p>W 2022 r. <strong>LGMD Global Advocacy Summit<\/strong> kt\u00f3ra zgromadzi\u0142a rzecznik\u00f3w, pacjent\u00f3w, badaczy i decydent\u00f3w z ca\u0142ego \u015bwiata w celu wsp\u00f3\u0142pracy i zwi\u0119kszenia wysi\u0142k\u00f3w na rzecz podnoszenia \u015bwiadomo\u015bci, wspierania bada\u0144 i poprawy \u017cycia os\u00f3b dotkni\u0119tych dystrofi\u0105 mi\u0119\u015bniow\u0105 ko\u0144czyn dolnych (LGMD).<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-23 hover-type-none\"><img decoding=\"async\" width=\"1200\" height=\"1600\" alt=\"2022girdie\" title=\"2022girdie\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022Girdie.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022Girdie.jpg\" class=\"lazyload img-responsive wp-image-8415\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271200%27%20height%3D%271600%27%20viewBox%3D%270%200%201200%201600%27%3E%3Crect%20width%3D%271200%27%20height%3D%271600%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022Girdie-200x267.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022Girdie-400x533.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022Girdie-600x800.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022Girdie-800x1067.jpg 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022Girdie.jpg 1200w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1200px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-37\"><p><strong>Girdie,<\/strong> ambasador LGMD, zosta\u0142 \"powo\u0142any do \u017cycia\" i zadebiutowa\u0142 na konferencji Wellstone Dystroglycanopathies Patient &amp; Family Conference w Iowa.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-24 hover-type-none\"><img decoding=\"async\" width=\"1080\" height=\"1080\" alt=\"2022externallyled\" title=\"2022 zewn\u0119trzny\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022ExternallyLed.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022ExternallyLed.jpg\" class=\"lazyload img-responsive wp-image-8416\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271080%27%20height%3D%271080%27%20viewBox%3D%270%200%201080%201080%27%3E%3Crect%20width%3D%271080%27%20height%3D%271080%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022ExternallyLed-200x200.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022ExternallyLed-400x400.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022ExternallyLed-600x600.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022ExternallyLed-800x800.jpg 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022ExternallyLed.jpg 1080w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1080px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-38\"><p>Pierwszy <strong>Zewn\u0119trzne spotkanie dotycz\u0105ce rozwoju lek\u00f3w ukierunkowanych na pacjenta (EL-PFDD) dla dystrofii mi\u0119\u015bniowej obr\u0119czy ko\u0144czyny dolnej (LGMD)<\/strong> z FDA i innymi zainteresowanymi stronami, zapewniaj\u0105c kluczow\u0105 platform\u0119 dla pacjent\u00f3w i opiekun\u00f3w do dzielenia si\u0119 swoimi do\u015bwiadczeniami i perspektywami w celu informowania o opracowywaniu lek\u00f3w i podejmowaniu decyzji regulacyjnych.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-39\"><p>CDC wprowadzi\u0142o specyficzne dla LGMD <strong>Kody ICD-10<\/strong>umo\u017cliwiaj\u0105c bardziej precyzyjne diagnozowanie, dokumentowanie i \u015bledzenie podtyp\u00f3w dystrofii mi\u0119\u015bniowej obr\u0119czy ko\u0144czyny dolnej w systemie opieki zdrowotnej.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-25 hover-type-none\"><img decoding=\"async\" width=\"1200\" height=\"180\" alt=\"2023 Titin Skinny Website Header 2076 \u00d7 180 1200x180\" title=\"2023 Titin Skinny Website Header 2076 \u00d7 180 1200 \u00d7 180\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-Titin-skinny-website-header-2076-\u00d7-180-1200x180-1.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-Titin-skinny-website-header-2076-\u00d7-180-1200x180-1.png\" class=\"lazyload img-responsive wp-image-8498\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271200%27%20height%3D%27180%27%20viewBox%3D%270%200%201200%20180%27%3E%3Crect%20width%3D%271200%27%20height%3D%27180%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-Titin-skinny-website-header-2076-\u00d7-180-1200x180-1-200x30.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-Titin-skinny-website-header-2076-\u00d7-180-1200x180-1-400x60.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-Titin-skinny-website-header-2076-\u00d7-180-1200x180-1-600x90.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-Titin-skinny-website-header-2076-\u00d7-180-1200x180-1-800x120.png 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-Titin-skinny-website-header-2076-\u00d7-180-1200x180-1.png 1200w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1200px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-40\"><p>Organizacja non-profit <a href=\"https:\/\/titinmyopathy.com\/\" target=\"_blank\" rel=\"noopener\"><strong>Team Titin, Inc.<\/strong><\/a> kt\u00f3ra wspiera spo\u0142eczno\u015b\u0107 LGMD2J\/R10.<\/p>\n<\/div><div class=\"fusion-text fusion-text-41\"><p>Team Titin by\u0142 gospodarzem <strong>Konferencja naukowo-rodzinna SciFam.<\/strong><\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-26 hover-type-none\"><img decoding=\"async\" width=\"508\" height=\"99\" alt=\"2023 Dff Logo\" title=\"2023 Dff Logo\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-DFF-logo.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-DFF-logo.png\" class=\"lazyload img-responsive wp-image-8499\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27508%27%20height%3D%2799%27%20viewBox%3D%270%200%20508%2099%27%3E%3Crect%20width%3D%27508%27%20height%3D%2799%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-DFF-logo-200x39.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-DFF-logo-400x78.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-DFF-logo.png 508w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 508px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-42\"><p>The <a href=\"https:\/\/dffoundation.com.au\/\" target=\"_blank\" rel=\"noopener\"><strong>Daniel Ferguson Fundacja LGMD<\/strong><\/a> zosta\u0142a za\u0142o\u017cona w Australii, a jej celem jest wspieranie bada\u0144, podnoszenie \u015bwiadomo\u015bci i zapewnianie zasob\u00f3w dla os\u00f3b i rodzin dotkni\u0119tych dystrofi\u0105 mi\u0119\u015bniow\u0105 ko\u0144czyn dolnych.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-43\"><p>Pierwszy pacjent otrzyma\u0142 dawk\u0119 <strong>Badanie kliniczne fazy 1\/2 w Europie terapii genowej LGMD-R9<\/strong>przeprowadzony przez Atamyo Therapeutics, stanowi\u0105cy znacz\u0105cy krok naprz\u00f3d w rozwoju terapii tego podtypu dystrofii mi\u0119\u015bniowej ko\u0144czyn.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-27 hover-type-none\"><img decoding=\"async\" width=\"658\" height=\"524\" alt=\"2022 Connecting\" title=\"2022 \u0141\u0105czenie\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022-Connecting.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022-Connecting.jpg\" class=\"lazyload img-responsive wp-image-8500\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27658%27%20height%3D%27524%27%20viewBox%3D%270%200%20658%20524%27%3E%3Crect%20width%3D%27658%27%20height%3D%27524%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022-Connecting-200x159.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022-Connecting-400x319.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022-Connecting-600x478.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022-Connecting.jpg 658w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 658px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-44\"><p>CureLGMD2i by\u0142o gospodarzem pierwszego<strong> \"Connecting for a Cure\"<\/strong> w Dniu \u015awiadomo\u015bci LGMD, gromadz\u0105c pacjent\u00f3w, rodziny, badaczy i zwolennik\u00f3w, aby podnosi\u0107 \u015bwiadomo\u015b\u0107, dzieli\u0107 si\u0119 wiedz\u0105 i wspiera\u0107 poszukiwanie lekarstwa na dystrofi\u0119 mi\u0119\u015bniow\u0105 ko\u0144czyn typu 2i.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-45\"><p>The <strong>Badanie wynik\u00f3w klinicznych\/historia naturalna dysferlinoapthy<\/strong> \u015bwi\u0119towa\u0142 10 lat udzia\u0142u pacjent\u00f3w i gromadzenia danych klinicznych, podkre\u015blaj\u0105c dekad\u0119 cennego wk\u0142adu w zrozumienie i leczenie tej specyficznej postaci dystrofii mi\u0119\u015bniowej ko\u0144czyn.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-28 hover-type-none\"><img decoding=\"async\" width=\"1200\" height=\"600\" alt=\"2022 Lab\" title=\"2022 Lab\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022-LAB.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022-LAB.png\" class=\"lazyload img-responsive wp-image-8502\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271200%27%20height%3D%27600%27%20viewBox%3D%270%200%201200%20600%27%3E%3Crect%20width%3D%271200%27%20height%3D%27600%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022-LAB-200x100.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022-LAB-400x200.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022-LAB-600x300.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022-LAB-800x400.png 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2022-LAB.png 1200w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1200px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-46\"><p><a href=\"https:\/\/www.lgmd-info.org\/pl\/knowledge-base\/lgmd-advocacy-bundles-lab-project\/\"><strong>Pakiety rzecznictwa LGMD<\/strong><\/a> zosta\u0142y wdro\u017cone w 6 klinikach w USA przez LGMD Awareness Foundation.<\/p>\n<\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-11 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-padding-top:40px;--awb-padding-bottom:0px;--awb-padding-top-small:0px;--awb-background-color:#ffffff;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-justify-content-center fusion-flex-content-wrap\" style=\"max-width:1456px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-37 awb-sticky awb-sticky-medium awb-sticky-large fusion_builder_column_1_5 1_5 fusion-flex-column fusion-animated\" style=\"--awb-bg-size:cover;--awb-width-large:20%;--awb-margin-top-large:30px;--awb-spacing-right-large:9.6%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:9.6%;--awb-width-medium:20%;--awb-order-medium:0;--awb-margin-top-medium:30px;--awb-spacing-right-medium:9.6%;--awb-spacing-left-medium:9.6%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:30px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:80px;\" data-animationtype=\"fadeInLeft\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-11 fusion-sep-none fusion-title-text fusion-title-size-two\" style=\"--awb-text-color:var(--awb-color5);--awb-margin-bottom:0px;\"><h2 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"font-family:&quot;Arvo&quot;;font-style:normal;font-weight:700;margin:0;text-transform:var(--awb-typography1-text-transform);--fontSize:38;line-height:var(--awb-typography3-line-height);\">2023<\/h2><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-38 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-no-small-visibility fusion-animated\" style=\"--awb-padding-top:60px;--awb-padding-bottom:60px;--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:2px;--awb-border-style:solid;--awb-width-large:10%;--awb-margin-top-large:50px;--awb-spacing-right-large:0%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:19.2%;--awb-width-medium:10%;--awb-order-medium:0;--awb-spacing-right-medium:0%;--awb-spacing-left-medium:19.2%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:0px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:130px;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:#ffffff;border-color:#ffffff;border-top-width:4px;\"><\/div><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-39 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-flex-align-self-stretch fusion-no-small-visibility fusion-animated\" style=\"--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:0;--awb-border-right:2px;--awb-border-style:solid;--awb-width-large:4%;--awb-margin-top-large:50px;--awb-spacing-right-large:72%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:-96%;--awb-width-medium:4%;--awb-order-medium:0;--awb-spacing-right-medium:72%;--awb-spacing-left-medium:-96%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-40 fusion-flex-column fusion-animated\" style=\"--awb-padding-top:50px;--awb-padding-bottom:50px;--awb-padding-left:40px;--awb-bg-size:cover;--awb-width-large:50%;--awb-margin-top-large:0px;--awb-spacing-right-large:3.84%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:3.84%;--awb-width-medium:50%;--awb-order-medium:0;--awb-spacing-right-medium:3.84%;--awb-spacing-left-medium:3.84%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeInUp\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-29 hover-type-none\"><img decoding=\"async\" width=\"773\" height=\"1006\" alt=\"2023voicepatient\" title=\"2023voicepatient\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023VoicePatient.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023VoicePatient.png\" class=\"lazyload img-responsive wp-image-8418\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27773%27%20height%3D%271006%27%20viewBox%3D%270%200%20773%201006%27%3E%3Crect%20width%3D%27773%27%20height%3D%271006%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023VoicePatient-200x260.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023VoicePatient-400x521.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023VoicePatient-600x781.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023VoicePatient.png 773w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 773px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-47\"><p>W 2023 r. <strong>Raport LGMD \"G\u0142os pacjenta\"<\/strong> w kt\u00f3rym podkre\u015blono niezaspokojone potrzeby i wyzwania, przed kt\u00f3rymi stoj\u0105 osoby z sze\u015bcioma okre\u015blonymi podtypami dystrofii mi\u0119\u015bniowej ko\u0144czyn dolnych, oraz dostarczono cennych informacji, kt\u00f3re pomog\u0105 ukierunkowa\u0107 przysz\u0142e badania i wysi\u0142ki w zakresie leczenia.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-48\"><p>Rozpocz\u0119to badanie maj\u0105ce na celu ocen\u0119 skuteczno\u015bci i bezpiecze\u0144stwa <strong>BBP-418 (Ribitol)<\/strong> u pacjent\u00f3w z dystrofi\u0105 mi\u0119\u015bniow\u0105 ko\u0144czyn dolnych 2I (LGMD2I\/R9), prowadzone przez ML BioSolutions.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-49\"><p>Pierwszy pacjent by\u0142 leczony w badaniu fazy 1\/fazy 2 produktu <strong>Terapia genowa AB-1003<\/strong> dla dystrofii mi\u0119\u015bniowej obr\u0119czy ko\u0144czyny typu 2I\/R9, przeprowadzonej przez AskBio, co stanowi znacz\u0105cy kamie\u0144 milowy w rozwoju nowych terapii dla tego podtypu LGMD.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-30 hover-type-none\"><img decoding=\"async\" width=\"808\" height=\"738\" alt=\"2023intlconference\" title=\"Konferencja 2023intl\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023IntlConference.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023IntlConference.png\" class=\"lazyload img-responsive wp-image-8419\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27808%27%20height%3D%27738%27%20viewBox%3D%270%200%20808%20738%27%3E%3Crect%20width%3D%27808%27%20height%3D%27738%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023IntlConference-200x183.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023IntlConference-400x365.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023IntlConference-600x548.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023IntlConference-800x731.png 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023IntlConference.png 808w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 808px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-50\"><p>Pierwszy <strong>\"hybrydowa\" Mi\u0119dzynarodowa Konferencja LGMD<\/strong> odby\u0142a si\u0119 w Waszyngtonie, \u0142\u0105cz\u0105c zar\u00f3wno osobisty, jak i wirtualny udzia\u0142, aby pomie\u015bci\u0107 globaln\u0105 publiczno\u015b\u0107 i wspiera\u0107 wsp\u00f3\u0142prac\u0119 mi\u0119dzy naukowcami, klinicystami, pacjentami i rzecznikami w walce z dystrofi\u0105 mi\u0119\u015bniow\u0105 ko\u0144czyn dolnych.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-max-width:400px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-31 hover-type-none\"><img decoding=\"async\" width=\"500\" height=\"500\" alt=\"2023 Lgmd2acalpainopathy Registry Logo White Background\" title=\"2023 Logo rejestru lgmd2acalpainopathy na bia\u0142ym tle\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-LGMD2ACalpainopathy-Registry-Logo-White-Background.webp\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-LGMD2ACalpainopathy-Registry-Logo-White-Background.webp\" class=\"lazyload img-responsive wp-image-8506\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27500%27%20height%3D%27500%27%20viewBox%3D%270%200%20500%20500%27%3E%3Crect%20width%3D%27500%27%20height%3D%27500%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-LGMD2ACalpainopathy-Registry-Logo-White-Background-66x66.webp 66w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-LGMD2ACalpainopathy-Registry-Logo-White-Background-150x150.webp 150w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-LGMD2ACalpainopathy-Registry-Logo-White-Background-200x200.webp 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-LGMD2ACalpainopathy-Registry-Logo-White-Background-300x300.webp 300w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-LGMD2ACalpainopathy-Registry-Logo-White-Background-400x400.webp 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-LGMD2ACalpainopathy-Registry-Logo-White-Background.webp 500w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 500px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-51\"><p><a href=\"https:\/\/www.curecalpain3.org\/\" target=\"_blank\" rel=\"noopener\">Koalicja na rzecz leczenia kalpainy 3<\/a> uruchamia nowy <strong>Rejestr LGMD2A\/kalpainopatii <\/strong><\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-32 hover-type-none\"><img decoding=\"async\" width=\"500\" height=\"281\" alt=\"2023 Dion\" title=\"2023 Dion\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-Dion.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-Dion.jpg\" class=\"lazyload img-responsive wp-image-8507\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27500%27%20height%3D%27281%27%20viewBox%3D%270%200%20500%20281%27%3E%3Crect%20width%3D%27500%27%20height%3D%27281%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-Dion-200x112.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-Dion-400x225.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2023-Dion.jpg 500w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 500px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-52\"><p>Organizacja non-profit <a href=\"https:\/\/www.thedionfund.org\/\" target=\"_blank\" rel=\"noopener\"><strong>Fundacja Dion<\/strong><\/a> kt\u00f3rej celem jest wspieranie bada\u0144, podnoszenie \u015bwiadomo\u015bci i zapewnianie zasob\u00f3w dla os\u00f3b i rodzin dotkni\u0119tych dystrofi\u0105 mi\u0119\u015bniow\u0105 ko\u0144czyn dolnych.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-53\"><p>Sarepta Therapeutics rozpocz\u0119\u0142a pierwsz\u0105 terapi\u0119 ca\u0142ego cia\u0142a\/uk\u0142adu w ramach badania klinicznego SRP 6004 Proof of Concept, b\u0119d\u0105cego cz\u0119\u015bci\u0105 programu SRP 6004 Proof of Concept. <a href=\"http:\/\/www.navigene.in\/\" target=\"_blank\" rel=\"noopener\"><strong>NAVIGENE<\/strong><\/a> badanie dysferlinopatii, stanowi\u0105ce znacz\u0105cy post\u0119p w podej\u015bciu do leczenia tej specyficznej postaci dystrofii mi\u0119\u015bniowej ko\u0144czyn.<\/p>\n<\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-12 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-padding-top:40px;--awb-padding-bottom:0px;--awb-padding-top-small:0px;--awb-background-color:#ffffff;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-justify-content-center fusion-flex-content-wrap\" style=\"max-width:1456px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-41 awb-sticky awb-sticky-medium awb-sticky-large fusion_builder_column_1_5 1_5 fusion-flex-column fusion-animated\" style=\"--awb-bg-size:cover;--awb-width-large:20%;--awb-margin-top-large:30px;--awb-spacing-right-large:9.6%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:9.6%;--awb-width-medium:20%;--awb-order-medium:0;--awb-margin-top-medium:30px;--awb-spacing-right-medium:9.6%;--awb-spacing-left-medium:9.6%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:30px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:80px;\" data-animationtype=\"fadeInLeft\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-12 fusion-sep-none fusion-title-text fusion-title-size-two\" style=\"--awb-text-color:var(--awb-color5);--awb-margin-bottom:0px;\"><h2 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"font-family:&quot;Arvo&quot;;font-style:normal;font-weight:700;margin:0;text-transform:var(--awb-typography1-text-transform);--fontSize:38;line-height:var(--awb-typography3-line-height);\">2024<\/h2><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-42 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-no-small-visibility fusion-animated\" style=\"--awb-padding-top:60px;--awb-padding-bottom:60px;--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:2px;--awb-border-style:solid;--awb-width-large:10%;--awb-margin-top-large:50px;--awb-spacing-right-large:0%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:19.2%;--awb-width-medium:10%;--awb-order-medium:0;--awb-spacing-right-medium:0%;--awb-spacing-left-medium:19.2%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:0px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:130px;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:#ffffff;border-color:#ffffff;border-top-width:4px;\"><\/div><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-43 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-flex-align-self-stretch fusion-no-small-visibility fusion-animated\" style=\"--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:0;--awb-border-right:2px;--awb-border-style:solid;--awb-width-large:4%;--awb-margin-top-large:50px;--awb-spacing-right-large:72%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:-96%;--awb-width-medium:4%;--awb-order-medium:0;--awb-spacing-right-medium:72%;--awb-spacing-left-medium:-96%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-44 fusion-flex-column fusion-animated\" style=\"--awb-padding-top:50px;--awb-padding-bottom:50px;--awb-padding-left:40px;--awb-bg-size:cover;--awb-width-large:50%;--awb-margin-top-large:0px;--awb-spacing-right-large:3.84%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:3.84%;--awb-width-medium:50%;--awb-order-medium:0;--awb-spacing-right-medium:3.84%;--awb-spacing-left-medium:3.84%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeInUp\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-33 hover-type-none\"><img decoding=\"async\" width=\"344\" height=\"132\" alt=\"2024 Sarepta Print Logo\" title=\"2024 Sarepta Print Logo\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-sarepta_print_logo.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-sarepta_print_logo.png\" class=\"lazyload img-responsive wp-image-8509\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27344%27%20height%3D%27132%27%20viewBox%3D%270%200%20344%20132%27%3E%3Crect%20width%3D%27344%27%20height%3D%27132%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-sarepta_print_logo-200x77.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-sarepta_print_logo.png 344w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 344px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-54\"><p>W 2024 r. rozpocz\u0119to badania przesiewowe w programie <strong>EMERGENE<\/strong> Badanie kliniczne fazy 3 SRP-9003 w leczeniu dystrofii mi\u0119\u015bniowej ko\u0144czyn typu 2E\/R4, prowadzone przez Sarepta Therapeutics, stanowi kluczowy krok w kierunku potencjalnych nowych opcji leczenia tego podtypu LGMD.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-34 hover-type-none\"><img decoding=\"async\" width=\"408\" height=\"136\" alt=\"2024drugworkshop\" title=\"2024drugworkshop\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024DrugWorkshop.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024DrugWorkshop.png\" class=\"lazyload img-responsive wp-image-8421\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27408%27%20height%3D%27136%27%20viewBox%3D%270%200%20408%20136%27%3E%3Crect%20width%3D%27408%27%20height%3D%27136%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024DrugWorkshop-200x67.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024DrugWorkshop-400x133.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024DrugWorkshop.png 408w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 408px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-55\"><p>LGMD <strong>Warsztaty naukowe dotycz\u0105ce opracowywania lek\u00f3w<\/strong> odby\u0142a si\u0119 w Bethesda w stanie Maryland, gromadz\u0105c naukowc\u00f3w, klinicyst\u00f3w i lider\u00f3w bran\u017cy w celu om\u00f3wienia i przyspieszenia rozwoju nowych strategii terapeutycznych dla dystrofii mi\u0119\u015bniowej obr\u0119czy ko\u0144czyny dolnej.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-max-width:500px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-35 hover-type-none\"><img decoding=\"async\" width=\"640\" height=\"162\" alt=\"2024 Atamyo\" title=\"2024 Atamyo\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-atamyo.jpeg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-atamyo.jpeg\" class=\"lazyload img-responsive wp-image-8510\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27640%27%20height%3D%27162%27%20viewBox%3D%270%200%20640%20162%27%3E%3Crect%20width%3D%27640%27%20height%3D%27162%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-atamyo-200x51.jpeg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-atamyo-400x101.jpeg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-atamyo-600x152.jpeg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-atamyo.jpeg 640w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 640px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-56\"><p>Aplikacja do bada\u0144 klinicznych <strong>ATA-200, badana terapia genowa<\/strong> dla dzieci z dystrofi\u0105 mi\u0119\u015bniow\u0105 ko\u0144czyn typu 2C\/R5, zosta\u0142 zatwierdzony we Francji i W\u0142oszech przez Atamyo Therapeutics, toruj\u0105c drog\u0119 do kluczowych bada\u0144 nad potencjalnymi metodami leczenia tego podtypu LGMD.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-36 hover-type-none\"><img decoding=\"async\" width=\"1200\" height=\"1600\" alt=\"2024 European\" title=\"2024 Europejski\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-European.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-European.jpg\" class=\"lazyload img-responsive wp-image-8422\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271200%27%20height%3D%271600%27%20viewBox%3D%270%200%201200%201600%27%3E%3Crect%20width%3D%271200%27%20height%3D%271600%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-European-200x267.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-European-400x533.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-European-600x800.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-European-800x1067.jpg 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-European.jpg 1200w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1200px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-57\"><p>Pierwszy <strong>LGMDR9 (LGMD2I) Europejski Dzie\u0144 Pacjenta<\/strong> odby\u0142a si\u0119 w Amsterdamie, w Holandii, zapewniaj\u0105c platform\u0119 dla pacjent\u00f3w, rodzin, badaczy i pracownik\u00f3w s\u0142u\u017cby zdrowia do nawi\u0105zywania kontakt\u00f3w, dzielenia si\u0119 do\u015bwiadczeniami i poznawania najnowszych osi\u0105gni\u0119\u0107 w leczeniu i zarz\u0105dzaniu dystrofi\u0105 mi\u0119\u015bniow\u0105 typu 2I.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-58\"><p>The <strong>Spotkanie naukowe LGMD2A\/R1<\/strong> odby\u0142a si\u0119 w Arlington w stanie Wirginia, gromadz\u0105c ekspert\u00f3w i badaczy w celu om\u00f3wienia najnowszych odkry\u0107 i post\u0119p\u00f3w w zrozumieniu i leczeniu dystrofii mi\u0119\u015bniowej ko\u0144czyn typu 2A\/R1.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-59\"><p>The <strong>Konferencja naukowa Dysferlin<\/strong> odby\u0142a si\u0119 w Houston w Teksasie, gromadz\u0105c badaczy, klinicyst\u00f3w i ekspert\u00f3w bran\u017cowych w celu podzielenia si\u0119 spostrze\u017ceniami i post\u0119pami w badaniach i leczeniu dysferlinopatii, formy dystrofii mi\u0119\u015bniowej obr\u0119czy ko\u0144czynowej.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-37 hover-type-none\"><img decoding=\"async\" width=\"1600\" height=\"1200\" alt=\"2024\" title=\"2024\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024.jpg\" class=\"lazyload img-responsive wp-image-8423\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271600%27%20height%3D%271200%27%20viewBox%3D%270%200%201600%201200%27%3E%3Crect%20width%3D%271600%27%20height%3D%271200%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-200x150.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-400x300.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-600x450.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-800x600.jpg 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-1200x900.jpg 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024.jpg 1600w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1600px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-60\"><p>The <a href=\"https:\/\/www.lgmd-info.org\/pl\/10year\/\"><strong>10. doroczny Dzie\u0144 \u015awiadomo\u015bci LGMD<\/strong><\/a> jest obchodzony na ca\u0142ym \u015bwiecie.<\/p>\n<\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-13 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-padding-top:40px;--awb-padding-bottom:0px;--awb-padding-top-small:0px;--awb-background-color:#ffffff;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-justify-content-center fusion-flex-content-wrap\" style=\"max-width:1456px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-45 awb-sticky awb-sticky-medium awb-sticky-large fusion_builder_column_1_5 1_5 fusion-flex-column fusion-animated\" style=\"--awb-bg-size:cover;--awb-width-large:20%;--awb-margin-top-large:30px;--awb-spacing-right-large:9.6%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:9.6%;--awb-width-medium:20%;--awb-order-medium:0;--awb-margin-top-medium:30px;--awb-spacing-right-medium:9.6%;--awb-spacing-left-medium:9.6%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:30px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:80px;\" data-animationtype=\"fadeInLeft\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-13 fusion-sep-none fusion-title-text fusion-title-size-two\" style=\"--awb-text-color:var(--awb-color5);--awb-margin-bottom:0px;\"><h2 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"font-family:&quot;Arvo&quot;;font-style:normal;font-weight:700;margin:0;text-transform:var(--awb-typography1-text-transform);--fontSize:38;line-height:var(--awb-typography3-line-height);\">2025<\/h2><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-46 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-no-small-visibility fusion-animated\" style=\"--awb-padding-top:60px;--awb-padding-bottom:60px;--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:2px;--awb-border-style:solid;--awb-width-large:10%;--awb-margin-top-large:50px;--awb-spacing-right-large:0%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:19.2%;--awb-width-medium:10%;--awb-order-medium:0;--awb-spacing-right-medium:0%;--awb-spacing-left-medium:19.2%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:0px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:130px;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:#ffffff;border-color:#ffffff;border-top-width:4px;\"><\/div><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-47 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-flex-align-self-stretch fusion-no-small-visibility fusion-animated\" style=\"--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:0;--awb-border-right:2px;--awb-border-style:solid;--awb-width-large:4%;--awb-margin-top-large:50px;--awb-spacing-right-large:72%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:-96%;--awb-width-medium:4%;--awb-order-medium:0;--awb-spacing-right-medium:72%;--awb-spacing-left-medium:-96%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-48 fusion-flex-column fusion-animated\" style=\"--awb-padding-top:50px;--awb-padding-bottom:50px;--awb-padding-left:40px;--awb-bg-size:cover;--awb-width-large:50%;--awb-margin-top-large:0px;--awb-spacing-right-large:3.84%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:3.84%;--awb-width-medium:50%;--awb-order-medium:0;--awb-spacing-right-medium:3.84%;--awb-spacing-left-medium:3.84%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeInUp\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-38 hover-type-none\"><a class=\"fusion-no-lightbox\" href=\"https:\/\/curescg.org\/\" target=\"_blank\" aria-label=\"Curescg 1\" rel=\"noopener noreferrer\"><img decoding=\"async\" width=\"838\" height=\"250\" alt=\"CureSCG logo\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/CureSCG_1-e1749574022301.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/CureSCG_1-e1749574022301.png\" class=\"lazyload img-responsive wp-image-8998\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27838%27%20height%3D%27250%27%20viewBox%3D%270%200%20838%20250%27%3E%3Crect%20width%3D%27838%27%20height%3D%27250%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/CureSCG_1-e1749574022301-200x60.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/CureSCG_1-e1749574022301-400x119.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/CureSCG_1-e1749574022301-600x179.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/CureSCG_1-e1749574022301-800x239.png 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/CureSCG_1-e1749574022301.png 838w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 838px\" \/><\/a><\/span><\/div><div class=\"fusion-text fusion-text-61\"><p><strong><a href=\"https:\/\/curescg.org\/\" target=\"_blank\" rel=\"noopener\">Cure SCG<\/a> (Cure Sarcoglycanopathy)<\/strong> was established in the United States. Their mission is to find a cure for LGMD Sarcoglycanopathy, inclusive of its <strong>LGMD2C\/R5, LGMD2D\/R3, LGMD2E\/\u200bR4, and LGMD2F\/R6 variants.<\/strong><\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-62\"><p>Coalition of LGMD Advocacy Organizations hosted a reception for researchers and clinicians at the <a href=\"https:\/\/www.mdaconference.org\/\" target=\"_blank\" rel=\"noopener\">2025 MDA Clinical and Scientific Conference<\/a> in Dallas, TX<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-39 hover-type-none\"><a class=\"fusion-no-lightbox\" href=\"https:\/\/www.youtube.com\/watch?v=AiRs0UuK9EA\" target=\"_blank\" aria-label=\"In Search Of Strength\" rel=\"noopener noreferrer\"><img decoding=\"async\" width=\"1440\" height=\"1800\" alt=\"In Search Of Strength\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/In_Search_of_Strength.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/In_Search_of_Strength.jpg\" class=\"lazyload img-responsive wp-image-8999\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271440%27%20height%3D%271800%27%20viewBox%3D%270%200%201440%201800%27%3E%3Crect%20width%3D%271440%27%20height%3D%271800%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/In_Search_of_Strength-200x250.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/In_Search_of_Strength-400x500.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/In_Search_of_Strength-600x750.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/In_Search_of_Strength-800x1000.jpg 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/In_Search_of_Strength-1200x1500.jpg 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/In_Search_of_Strength.jpg 1440w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1440px\" \/><\/a><\/span><\/div><div class=\"fusion-text fusion-text-63\"><p>The documentary\u00a0<a href=\"https:\/\/www.youtube.com\/watch?v=AiRs0UuK9EA\" target=\"_blank\" rel=\"noopener\"><strong>\u201cIn Search of Strength \u2013 The Unfinished Fight Against\u00a0Muscular\u00a0Dystrophy\u201d<\/strong><\/a>\u00a0was released.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-max-width:500px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-40 hover-type-none\"><img decoding=\"async\" width=\"1472\" height=\"368\" alt=\"Curelgmd2t\" title=\"Curelgmd2t\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/CureLGMD2T.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/CureLGMD2T.jpg\" class=\"lazyload img-responsive wp-image-9000\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271472%27%20height%3D%27368%27%20viewBox%3D%270%200%201472%20368%27%3E%3Crect%20width%3D%271472%27%20height%3D%27368%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/CureLGMD2T-200x50.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/CureLGMD2T-400x100.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/CureLGMD2T-600x150.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/CureLGMD2T-800x200.jpg 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/CureLGMD2T-1200x300.jpg 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/06\/CureLGMD2T.jpg 1472w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1472px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-64\"><p><strong>Cure LGMD2T<\/strong>\u00a0was established in the United States. Their mission is dedicated to raising awareness of\u00a0<strong>Limb-Girdle\u00a0Muscular\u00a0Dystrophy\u00a02T<\/strong>\u00a0and providing critical funding for research into effective treatments.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-max-width:500px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-41 hover-type-none\"><img decoding=\"async\" width=\"1000\" height=\"411\" alt=\"Askbio Logo Bayer\" title=\"Askbio Logo Bayer Tagline Web\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/04\/AskBio_logo_Bayer_tagline_web.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/04\/AskBio_logo_Bayer_tagline_web.png\" class=\"lazyload img-responsive wp-image-8457\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271000%27%20height%3D%27411%27%20viewBox%3D%270%200%201000%20411%27%3E%3Crect%20width%3D%271000%27%20height%3D%27411%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/04\/AskBio_logo_Bayer_tagline_web-200x82.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/04\/AskBio_logo_Bayer_tagline_web-400x164.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/04\/AskBio_logo_Bayer_tagline_web-600x247.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/04\/AskBio_logo_Bayer_tagline_web-800x329.png 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/04\/AskBio_logo_Bayer_tagline_web.png 1000w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1000px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-65\"><p>AskBio Advances Gene Therapy Clinical Trial\u00a0<strong>for\u00a0Limb-Girdle\u00a0Muscular\u00a0Dystrophy\u00a0Type 2I\/R9<\/strong>\u00a0with Dosing of First Participant in Second Cohort<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-max-width:500px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-42 hover-type-none\"><img decoding=\"async\" width=\"640\" height=\"162\" alt=\"2024 Atamyo\" title=\"2024 Atamyo\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-atamyo.jpeg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-atamyo.jpeg\" class=\"lazyload img-responsive wp-image-8510\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27640%27%20height%3D%27162%27%20viewBox%3D%270%200%20640%20162%27%3E%3Crect%20width%3D%27640%27%20height%3D%27162%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-atamyo-200x51.jpeg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-atamyo-400x101.jpeg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-atamyo-600x152.jpeg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/07\/2024-atamyo.jpeg 640w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 640px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-66\"><p>Atamyo Therapeutics Announces First Patients Dosed with ATA-200 Gene Therapy in\u00a0<strong>LGMD-2C\/R5<\/strong>\u00a0Clinical Trial<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-67\"><p>U.S. FDA Grants Platform Technology Designation to the Viral Vector Used in SRP-9003, Sarepta\u2019s Investigational Gene Therapy for the Treatment of\u00a0<strong>Limb\u00a0Girdle\u00a0Muscular\u00a0Dystrophy\u00a0Type 2E\/R4<\/strong><\/p>\n<\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-14 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-padding-top:40px;--awb-padding-bottom:0px;--awb-padding-top-small:0px;--awb-background-color:#ffffff;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-justify-content-center fusion-flex-content-wrap\" style=\"max-width:1456px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-49 awb-sticky awb-sticky-medium awb-sticky-large fusion_builder_column_1_5 1_5 fusion-flex-column fusion-animated\" style=\"--awb-bg-size:cover;--awb-width-large:20%;--awb-margin-top-large:30px;--awb-spacing-right-large:9.6%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:9.6%;--awb-width-medium:20%;--awb-order-medium:0;--awb-margin-top-medium:30px;--awb-spacing-right-medium:9.6%;--awb-spacing-left-medium:9.6%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:30px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:80px;\" data-animationtype=\"fadeInLeft\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-14 fusion-sep-none fusion-title-text fusion-title-size-two\" style=\"--awb-text-color:var(--awb-color5);--awb-margin-bottom:0px;\"><h2 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"font-family:&quot;Arvo&quot;;font-style:normal;font-weight:700;margin:0;text-transform:var(--awb-typography1-text-transform);--fontSize:38;line-height:var(--awb-typography3-line-height);\">2026<\/h2><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-50 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-no-small-visibility fusion-animated\" style=\"--awb-padding-top:60px;--awb-padding-bottom:60px;--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:2px;--awb-border-style:solid;--awb-width-large:10%;--awb-margin-top-large:50px;--awb-spacing-right-large:0%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:19.2%;--awb-width-medium:10%;--awb-order-medium:0;--awb-spacing-right-medium:0%;--awb-spacing-left-medium:19.2%;--awb-width-small:100%;--awb-order-small:0;--awb-margin-top-small:0px;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;--awb-sticky-offset:130px;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:#ffffff;border-color:#ffffff;border-top-width:4px;\"><\/div><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-51 awb-sticky awb-sticky-medium awb-sticky-large fusion-flex-column fusion-flex-align-self-stretch fusion-no-small-visibility fusion-animated\" style=\"--awb-bg-size:cover;--awb-border-color:var(--awb-color4);--awb-border-top:0;--awb-border-right:2px;--awb-border-style:solid;--awb-width-large:4%;--awb-margin-top-large:50px;--awb-spacing-right-large:72%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:-96%;--awb-width-medium:4%;--awb-order-medium:0;--awb-spacing-right-medium:72%;--awb-spacing-left-medium:-96%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeIn\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-52 fusion-flex-column fusion-animated\" style=\"--awb-padding-top:50px;--awb-padding-bottom:50px;--awb-padding-left:40px;--awb-bg-size:cover;--awb-width-large:50%;--awb-margin-top-large:0px;--awb-spacing-right-large:3.84%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:3.84%;--awb-width-medium:50%;--awb-order-medium:0;--awb-spacing-right-medium:3.84%;--awb-spacing-left-medium:3.84%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationtype=\"fadeInUp\" data-animationduration=\"1.2\" data-animationoffset=\"top-into-view\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-43 hover-type-none\"><a class=\"fusion-no-lightbox\" href=\"https:\/\/curescg.org\/\" target=\"_blank\" aria-label=\"News 2026 03 10\" rel=\"noopener noreferrer\"><img decoding=\"async\" width=\"888\" height=\"497\" alt=\"CureSCG logo\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/news-2026-03-10.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/news-2026-03-10.jpg\" class=\"lazyload img-responsive wp-image-9397\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27888%27%20height%3D%27497%27%20viewBox%3D%270%200%20888%20497%27%3E%3Crect%20width%3D%27888%27%20height%3D%27497%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/news-2026-03-10-200x112.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/news-2026-03-10-400x224.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/news-2026-03-10-600x336.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/news-2026-03-10-800x448.jpg 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/news-2026-03-10.jpg 888w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 888px\" \/><\/a><\/span><\/div><div class=\"fusion-text fusion-text-68\"><p><a href=\"https:\/\/atamyo.com\/\" target=\"_blank\" rel=\"noopener\">Atamyo Therapeutics<\/a> Presents Positive Safety and Efficacy Data from a US Phase 1b\/2 Trial of its <b>Gene Therapy (ATA-200) for Linb-Girdle Muscular Dystrophy R5 (LGMD-R5)<\/b><\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-44 hover-type-none\"><a class=\"fusion-no-lightbox\" href=\"https:\/\/curescg.org\/\" target=\"_blank\" aria-label=\"News 2026 03\" rel=\"noopener noreferrer\"><img decoding=\"async\" width=\"817\" height=\"486\" alt=\"CureSCG logo\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/news-2026-03.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/news-2026-03.jpg\" class=\"lazyload img-responsive wp-image-9398\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27817%27%20height%3D%27486%27%20viewBox%3D%270%200%20817%20486%27%3E%3Crect%20width%3D%27817%27%20height%3D%27486%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/news-2026-03-200x119.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/news-2026-03-400x238.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/news-2026-03-600x357.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/news-2026-03-800x476.jpg 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/news-2026-03.jpg 817w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 817px\" \/><\/a><\/span><\/div><div class=\"fusion-text fusion-text-69\"><p><a href=\"https:\/\/www.google.com\/aclk?sa=L&amp;ai=DChsSEwjk-Lf0kNqTAxWSnFoFHa4uL-AYACICCAEQABoCdnU&amp;ae=2&amp;aspm=1&amp;co=1&amp;ase=2&amp;gclid=Cj0KCQjws83OBhD4ARIsACblj1-Ns3yvVK4LEe0k56Uqs7neZ-zynt-rYxnL3OaNWKsR75F7bOTIU9EaAuwoEALw_wcB&amp;cid=CAASZeRomZBMJbz3iLnzAIqGxthYGhnbB8O7qzvQc82Mg5adATbe40l9mWS-1cryWZWHm5RXToK4CuavpSLSQped9WCeIVshOQXU8hlOFhJPCLnRK_3fmPNIFM0STKUPVs_sQOaeWvSE&amp;cce=2&amp;category=acrcp_v1_35&amp;sig=AOD64_3-ywPhySzffvfNE4KvdAEwcP-6dg&amp;q&amp;nis=4&amp;adurl&amp;ved=2ahUKEwjO7bL0kNqTAxViTTABHczfD44Q0Qx6BAgMEAE\" target=\"_blank\" rel=\"noopener\">BrideBio<\/a> Submits NDA to FDA for BBP-418 for Individuals Living with LGMD2I\/R9<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-color:#ffffff;--awb-caption-text-color:#ffffff;--awb-caption-text-size:17px;--awb-caption-text-transform:var(--awb-typography4-text-transform);--awb-caption-text-line-height:1.7;--awb-caption-text-letter-spacing:0px;--awb-caption-overlay-color:#434549;--awb-caption-margin-top:0px;--awb-caption-margin-bottom:40px;--awb-caption-title-font-family:&quot;Kanit&quot;;--awb-caption-title-font-weight:400;--awb-caption-title-font-style:normal;--awb-caption-title-size:20px;--awb-caption-title-transform:var(--awb-typography1-text-transform);--awb-caption-title-line-height:1.2;--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);--awb-caption-text-font-family:&quot;Source Serif Pro&quot;;\"><span class=\"fusion-imageframe imageframe-none imageframe-45 hover-type-none\"><a class=\"fusion-no-lightbox\" href=\"https:\/\/www.youtube.com\/watch?v=AiRs0UuK9EA\" target=\"_blank\" aria-label=\"2026 Policy Action Day\" rel=\"noopener noreferrer\"><img decoding=\"async\" width=\"2048\" height=\"1717\" alt=\"2026 Policy Action Day\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/2026-Policy-Action-Day.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/2026-Policy-Action-Day.jpg\" class=\"lazyload img-responsive wp-image-9399\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%272048%27%20height%3D%271717%27%20viewBox%3D%270%200%202048%201717%27%3E%3Crect%20width%3D%272048%27%20height%3D%271717%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/2026-Policy-Action-Day-200x168.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/2026-Policy-Action-Day-400x335.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/2026-Policy-Action-Day-600x503.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/2026-Policy-Action-Day-800x671.jpg 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/2026-Policy-Action-Day-1200x1006.jpg 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/2026-Policy-Action-Day.jpg 2048w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 2048px\" \/><\/a><\/span><\/div><div class=\"fusion-text fusion-text-70\"><p><strong>LGMD Policy Action Day<\/strong> brought our community directly to Capitol Hill \u2014 with a full schedule of meetings across both the House and Senate to address the realities of ultra-rare drug development. LGMD Policy Action Days bring in scientific experts who understand the health policy ecosystem as it intersects with science. It is a perspective that policymakers want to hear, and the stories of those with lived experience help underscore the need as we share how ultra-rare drug development must evolve to get treatments to our communities.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color2);border-color:var(--awb-color2);border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-margin-bottom:20px;--awb-caption-title-font-family:var(--h2_typography-font-family);--awb-caption-title-font-weight:var(--h2_typography-font-weight);--awb-caption-title-font-style:var(--h2_typography-font-style);--awb-caption-title-size:var(--h2_typography-font-size);--awb-caption-title-transform:var(--h2_typography-text-transform);--awb-caption-title-line-height:var(--h2_typography-line-height);--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);\"><span class=\"fusion-imageframe imageframe-none imageframe-46 hover-type-none\"><img decoding=\"async\" width=\"647\" height=\"523\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/COE.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/COE.jpg\" alt class=\"lazyload img-responsive wp-image-9412\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27647%27%20height%3D%27523%27%20viewBox%3D%270%200%20647%20523%27%3E%3Crect%20width%3D%27647%27%20height%3D%27523%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/COE-200x162.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/COE-400x323.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/COE-600x485.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/04\/COE.jpg 647w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 647px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-71\"><p class=\"block font-figtree whitespace-pre-line &#091;&amp;_a&#093;:underline &#091;&amp;_a&#093;:decoration-tertiaryBright &#091;&amp;_a:hover&#093;:no-underline text-primary &#091;&amp;_a&#093;:text-primary text-3xl lg:text-4xl leading-&#091;1.23em&#093; lg:leading-&#091;1.3125em&#093; font-semibold ui-kit-press-release__headline top-container font-semibold mb-6 lg:mb-10 !whitespace-normal &#091;&amp;_ul&#093;:pl-14 &#091;&amp;_ol&#093;:pl-14\">The Speak Foundation Launches Patient-Led National <strong>LGMD Centers of Excellence<\/strong>, Uniting Leading Academic Institutions to Accelerate Clinical Trials and New Therapies.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:#949599;border-color:#949599;border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-caption-title-font-family:var(--h2_typography-font-family);--awb-caption-title-font-weight:var(--h2_typography-font-weight);--awb-caption-title-font-style:var(--h2_typography-font-style);--awb-caption-title-size:var(--h2_typography-font-size);--awb-caption-title-transform:var(--h2_typography-text-transform);--awb-caption-title-line-height:var(--h2_typography-line-height);--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);\"><span class=\"fusion-imageframe imageframe-none imageframe-47 hover-type-none\"><img decoding=\"async\" width=\"820\" height=\"1024\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/05\/news-2026-05-27.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/05\/news-2026-05-27-820x1024.jpg\" alt class=\"lazyload img-responsive wp-image-9459\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271639%27%20height%3D%272048%27%20viewBox%3D%270%200%201639%202048%27%3E%3Crect%20width%3D%271639%27%20height%3D%272048%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/05\/news-2026-05-27-200x250.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/05\/news-2026-05-27-400x500.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/05\/news-2026-05-27-600x750.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/05\/news-2026-05-27-800x1000.jpg 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/05\/news-2026-05-27-1200x1499.jpg 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/05\/news-2026-05-27.jpg 1639w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 820px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-72\"><p><span class=\"x193iq5w xeuugli x13faqbe x1vvkbs x1xmvt09 x1lliihq x1s928wv xhkezso x1gmr53x x1cpjm7i x1fgarty x1943h6x xudqn12 x3x7a5m x6prxxf xvq8zen xo1l8bm xzsf02u x1yc453h\" dir=\"auto\">The FDA has accepted the new drug application (NDA) from BridgeBio (MLBio Solutions)! This is an amazing step toward<strong> potential approval of the first-ever treatment<\/strong> for people living with LGMD 2I\/R9! A PDUFA (Prescription Drug User Fee Act) target action date of November 27, 2026 has been set, the date by which the FDA will complete its review.<\/span><\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:#949599;border-color:#949599;border-top-width:1px;\"><\/div><\/div><div class=\"fusion-image-element\" style=\"--awb-caption-title-font-family:var(--h2_typography-font-family);--awb-caption-title-font-weight:var(--h2_typography-font-weight);--awb-caption-title-font-style:var(--h2_typography-font-style);--awb-caption-title-size:var(--h2_typography-font-size);--awb-caption-title-transform:var(--h2_typography-text-transform);--awb-caption-title-line-height:var(--h2_typography-line-height);--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);\"><span class=\"fusion-imageframe imageframe-none imageframe-48 hover-type-none\"><img decoding=\"async\" width=\"1024\" height=\"1024\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/06\/719203026_1472044264961124_7370179043068896054_n.jpg\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/06\/719203026_1472044264961124_7370179043068896054_n-1024x1024.jpg\" alt class=\"lazyload img-responsive wp-image-9510\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271254%27%20height%3D%271254%27%20viewBox%3D%270%200%201254%201254%27%3E%3Crect%20width%3D%271254%27%20height%3D%271254%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/06\/719203026_1472044264961124_7370179043068896054_n-200x200.jpg 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/06\/719203026_1472044264961124_7370179043068896054_n-400x400.jpg 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/06\/719203026_1472044264961124_7370179043068896054_n-600x600.jpg 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/06\/719203026_1472044264961124_7370179043068896054_n-800x800.jpg 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/06\/719203026_1472044264961124_7370179043068896054_n-1200x1200.jpg 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2026\/06\/719203026_1472044264961124_7370179043068896054_n.jpg 1254w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 1024px\" \/><\/span><\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:50px;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:#949499;border-color:#949499;border-top-width:1px;\"><\/div><\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;width:100%;\"><div class=\"fusion-separator-border sep-single\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:#919299;border-color:#919299;border-top-width:2px;\"><\/div><\/div><\/div><\/div><\/div><\/div><\/p>","protected":false},"excerpt":{"rendered":"<p>Poznaj dekad\u0119 znacz\u0105cych kamieni milowych w walce z dystrofi\u0105 mi\u0119\u015bniow\u0105 ko\u0144czyn dolnych (LGMD). Od prze\u0142omowego sekwencjonowania genetycznego i kampanii u\u015bwiadamiaj\u0105cych po mi\u0119dzynarodowe konferencje i badania kliniczne - odkryj znacz\u0105ce post\u0119py i ci\u0105g\u0142e wysi\u0142ki na rzecz poprawy \u017cycia os\u00f3b dotkni\u0119tych LGMD.<\/p>","protected":false},"author":1,"featured_media":9006,"parent":43,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"100-width.php","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-8368","page","type-page","status-publish","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>LGMD Milestones - Over a Decade of Difference - LGMD Awareness Foundation<\/title>\n<meta name=\"description\" content=\"Explore a decade of impactful milestones in the fight against Limb-Girdle Muscular Dystrophy (LGMD), from groundbreaking genetic sequencing and awareness campaigns to international conferences and clinical trials.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/pl\/knowledge-base\/lgmd-milestones-a-decade-of-difference\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Milestones - 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