{"id":5567,"date":"2021-11-18T21:17:03","date_gmt":"2021-11-18T21:17:03","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?post_type=tribe_events&#038;p=5567"},"modified":"2022-09-02T15:40:05","modified_gmt":"2022-09-02T15:40:05","slug":"patient-focus-drug-development-session-with-the-fda","status":"publish","type":"tribe_events","link":"https:\/\/www.lgmd-info.org\/ko\/event\/patient-focus-drug-development-session-with-the-fda\/","title":{"rendered":"Externally-Led Patient-Focused Drug Development Session On LGMD"},"content":{"rendered":"<div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 fusion-flex-container 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-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-blend:overlay;--awb-bg-size:cover;--awb-width-large:100%;--awb-margin-top-large:0px;--awb-spacing-right-large:1.92%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:1.92%;--awb-width-medium:100%;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-text fusion-text-1\"><div class=\"x-el x-el-div c1-1 c1-2 c1-1u c1-30 c1-25 c1-86 c1-10 c1-27 c1-32 c1-29 c1-2a c1-b c1-c c1-87 c1-88 c1-2b c1-2c c1-2d c1-2e c1-d c1-89 c1-8a c1-e c1-f c1-g\" data-ux=\"GridCell\">\n<div class=\"x-el x-el-div x-el c1-1 c1-2 c1-11 c1-6t c1-4 c1-8b c1-8c c1-4a c1-8d c1-8e c1-8f c1-b c1-c c1-8g c1-8h c1-d c1-e c1-f c1-g c1-1 c1-2 c1-b c1-c c1-d c1-e c1-f c1-g\" data-ux=\"ContentBasic\">\n<h2 class=\"x-el x-el-h1 c1-1 c1-2 c1-18 c1-19 c1-8i c1-2p c1-4d c1-1b c1-1c c1-b c1-2o c1-8j c1-1f c1-8k c1-8l c1-8m c1-8n\" role=\"heading\" aria-level=\"1\" data-ux=\"ContentHeading\" data-aid=\"CONTENT_MEDIA_HEADLINE1_RENDERED\" data-promoted-from=\"4\" data-order=\"1\" data-typography=\"HeadingGamma\" data-font-scaled=\"true\">The LGMD community will be leading an Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting on September 23, 2022.<\/h2>\n<div class=\"x-el c1-1 c1-2 c1-18 c1-19 c1-1a c1-1b c1-1c c1-8o c1-8p c1-8q c1-8r c1-8s c1-8t c1-8u c1-8v c1-8w c1-8x c1-8y c1-8z c1-90 c1-91 c1-92 c1-93 c1-94 c1-95 c1-96 c1-97 c1-98 c1-99 c1-9a c1-9b c1-9c c1-9d c1-9e c1-9f c1-30 c1-b c1-2o c1-9g c1-1f c1-9h c1-9i c1-9j c1-9k x-rt\" data-ux=\"ContentText\" data-aid=\"CONTENT_MEDIA_DESCRIPTION1_RENDERED\" data-typography=\"BodyAlpha\" data-font-scaled=\"true\">\n<ul>\n<li><strong class=\"x-el x-el-span c1-2f c1-2g c1-b c1-9l c1-2t c1-50 c1-9m\">What will happen at this Externally-Led Patient Focus Drug Development (EL-PFDD)<\/strong><strong class=\"x-el x-el-span c1-2f c1-2g c1-b c1-9l c1-2t c1-50 c1-9m\"> meeting? <\/strong><span class=\"x-el x-el-span c1-2f c1-2g c1-b c1-9l c1-2t c1-50 c1-9m\"> This important, monumental effort will give individuals diagnosed with limb-girdle muscular dystrophy types 2A, 2C, 2D, 2E, 2F, and 2I an opportunity to share with the FDA and other stakeholders about the experiences and challenges of living with LGMD.<\/span><\/li>\n<li><strong class=\"x-el x-el-span c1-2f c1-2g c1-b c1-9l c1-2t c1-50 c1-9m\">Where will the meeting take place? <\/strong>The meeting will take place virtually and will be live. Participants will be able to watch the event as it occurs.<\/li>\n<li><strong class=\"x-el x-el-span c1-2f c1-2g c1-b c1-9l c1-2t c1-50 c1-9m\">How can I get involved? <\/strong>You will be able to participate in surveys prior to the event to share your needs as an individual living with LGMD. \u00a0On the day of the meeting, we will hear several pre-recorded patient testimonies. You can also participate by answering live polling questions and by either calling or writing in with your comments. We want your voices to be heard!<\/li>\n<li><strong class=\"x-el x-el-span c1-2f c1-2g c1-b c1-9l c1-2t c1-50 c1-9m\">What do we hope to gain?\u00a0<\/strong>The EL-PFDD meeting is designed to engage patients and elicit their unique perspectives. With this information, our goal is to enable knowledgeable development and review of LGMD therapies that meet the needs and expectations of our patient community. The meeting will be summarized in a Voice of the Patient report. The report, as well as recorded footage of the meeting, will be publicly available.<\/li>\n<\/ul>\n<p>Please note that this initial endeavor represents Phase 1 and will include six LGMD subtypes. We anticipate additional LGMD subtypes may present to the FDA and other stakeholders at future EL-PFDD meetings.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<div class=\"x-el c1-1 c1-2 c1-18 c1-19 c1-1a c1-1b c1-1c c1-8o c1-8p c1-8q c1-8r c1-8s c1-8t c1-8u c1-8v c1-8w c1-8x c1-8y c1-8z c1-90 c1-91 c1-92 c1-93 c1-94 c1-95 c1-96 c1-97 c1-98 c1-99 c1-9a c1-9b c1-9c c1-9d c1-9e c1-9f c1-4 c1-24 c1-b c1-2o c1-9g c1-1f c1-9h c1-9i c1-9j c1-9k x-rt\" data-ux=\"ContentCardText\" data-aid=\"CONTENT_MEDIA_DESCRIPTION2_RENDERED\" data-typography=\"BodyAlpha\" data-font-scaled=\"true\">\n<p><strong class=\"x-el x-el-span c1-2f c1-2g c1-b c1-9l c1-2t c1-50 c1-9m\">LET YOUR VOICE BE HEARD! <\/strong><\/p>\n<p>Do you want to help us make historical changes for the limb-girdle community?<\/p>\n<p>If so, we need your voice! The subtypes of 2A, 2C, 2D, 2E, 2F, and 2I will be highlighted in this first phase of the PFDD meeting.<\/p>\n<p>Learn more and PRE-REGISTER at\u00a0<a href=\"https:\/\/lgmdpfdd.com\" target=\"_blank\" rel=\"noopener\"> https:\/\/lgmdpfdd.com<\/a><\/p>\n<\/div>\n<\/div><\/div><\/div><\/div><\/div>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5871,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"_tribe_events_status":"","_tribe_events_status_reason":"","footnotes":""},"tags":[],"tribe_events_cat":[],"class_list":["post-5567","tribe_events","type-tribe_events","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>Externally-Led Patient-Focused Drug Development Session On LGMD - LGMD Awareness Foundation<\/title>\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\/ko\/event\/patient-focus-drug-development-session-with-the-fda\/\" \/>\n<meta property=\"og:locale\" content=\"ko_KR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Externally-Led Patient-Focused Drug Development Session On LGMD - 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