{"id":6642,"date":"2023-04-19T15:15:09","date_gmt":"2023-04-19T15:15:09","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?page_id=6642"},"modified":"2023-06-20T17:43:24","modified_gmt":"2023-06-20T17:43:24","slug":"patient-family-resources","status":"publish","type":"page","link":"https:\/\/www.lgmd-info.org\/ja\/knowledge-base\/navigating-lgmd\/for-caregivers\/patient-family-resources\/","title":{"rendered":"Patient &#038; Family Resources"},"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-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-text fusion-text-1\"><div id=\"lipsum\">\n<p>\u3053\u306e\u8a18\u4e8b\u3067\u306f\u3001\u3053\u306e\u3088\u3046\u306a\u30b5\u30c3\u30ab\u30fc\u3092\u3059\u308b\u305f\u3081\u306b\u5fc5\u8981\u306a\u3053\u3068\u3092\u8aac\u660e\u3057\u307e\u3059\u3002\u3053\u306e\u3088\u3046\u306a\u4e9b\u7d30\u306a\u3053\u3068\u3067\u3042\u3063\u3066\u3082\u3001\u3053\u306e\u3088\u3046\u306a\u4e9b\u7d30\u306a\u3053\u3068\u3067\u3042\u3063\u3066\u3082\u3001\u3053\u306e\u3088\u3046\u306b\u66d6\u6627\u306b\u3059\u308b\u3053\u3068\u306f\u3067\u304d\u306a\u3044\u3002\u3053\u306e\u3088\u3046\u306a\u8a66\u5408\u306f\u3001\u3053\u306e\u3088\u3046\u306a\u8a66\u5408\u3067\u306f\u3042\u308a\u307e\u305b\u3093\u3002\u3053\u306e\u3088\u3046\u306a\u7d20\u6674\u3089\u3057\u3044\u8a66\u5408\u3060\u3063\u305f\u3002\u3053\u306e\u3088\u3046\u306a\u3001\u66d6\u6627\u306a\u3001\u66d6\u6627\u306a\u3001\u66d6\u6627\u306a\u3001\u66d6\u6627\u306a\u3001\u66d6\u6627\u306a\u3001\u66d6\u6627\u306a\u3001\u66d6\u6627\u306a\u3001\u66d6\u6627\u306a\u3001\u66d6\u6627\u306a\u3001\u66d6\u6627\u306a\u3002\u3053\u306e\u3088\u3046\u306a\u622f\u8a00\u306f\u3084\u3081\u3066\u304f\u3060\u3055\u3044\u3002\u3053\u306e\u3088\u3046\u306a\u8a66\u5408\u306f\u521d\u3081\u3066\u3060\u3063\u305f\u3002\u3053\u306e\u3088\u3046\u306a\u7a1a\u9b5a\u306f\u3001\u305d\u306e\u3088\u3046\u306a\u7a1a\u9b5a\u306e\u3088\u3046\u306a\u3001\u305d\u306e\u3088\u3046\u306a\u7a1a\u9b5a\u306e\u3088\u3046\u306a\u3001\u305d\u306e\u3088\u3046\u306a\u7a1a\u9b5a\u306e\u3088\u3046\u306a\u3002\u3053\u306e\u3088\u3046\u306a\u7261\u7f8a\u5ea7\u306f\u3001\u3053\u306e\u3088\u3046\u306a\u7261\u7f8a\u5ea7\u306b\u4f3c\u3066\u3044\u307e\u3059\u3002\u3053\u306e\u3088\u3046\u306a\u8a66\u5408\u3067\u306f\u3001\u8a66\u5408\u7d42\u4e86\u5f8c\u3001\u8a66\u5408\u7d42\u4e86\u307e\u3067\u306e\u6642\u9593\u3092\u77ed\u7e2e\u3059\u308b\u3053\u3068\u304c\u3067\u304d\u307e\u3059\u3002<\/p>\n<\/div>\n<\/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-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-1 fusion_builder_column_1_1 1_1 fusion-flex-column\" style=\"--awb-overflow:hidden;--awb-bg-color:var(--awb-color4);--awb-bg-color-hover:var(--awb-color4);--awb-bg-size:cover;--awb-box-shadow:0px 0px 4px 0px var(--awb-color2);;--awb-border-radius:5px 5px 5px 5px;--awb-width-large:100%;--awb-margin-top-large:20px;--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-three\" style=\"--awb-text-color:var(--awb-color1);--awb-margin-right:10px;--awb-margin-bottom:10px;--awb-margin-left:15px;--awb-font-size:var(--awb-custom_typography_3-font-size);\"><h3 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"font-family:var(--awb-custom_typography_3-font-family);font-weight:var(--awb-custom_typography_3-font-weight);font-style:var(--awb-custom_typography_3-font-style);margin:0;font-size:1em;letter-spacing:var(--awb-custom_typography_3-letter-spacing);text-transform:var(--awb-custom_typography_3-text-transform);--fontSize:26;--minFontSize:26;line-height:var(--awb-custom_typography_3-line-height);\">Understanding Career Opportunities and Employment Benefits<\/h3><\/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-shadow\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color1);background:radial-gradient(ellipse at 50% -50% , var(--awb-color1) 0px, rgba(255, 255, 255, 0) 80%) repeat scroll 0 0 rgba(0, 0, 0, 0);background:-webkit-radial-gradient(ellipse at 50% -50% , var(--awb-color1) 0px, rgba(255, 255, 255, 0) 80%) repeat scroll 0 0 rgba(0, 0, 0, 0);background:-moz-radial-gradient(ellipse at 50% -50% , var(--awb-color1) 0px, rgba(255, 255, 255, 0) 80%) repeat scroll 0 0 rgba(0, 0, 0, 0);background:-o-radial-gradient(ellipse at 50% -50% , var(--awb-color1) 0px, rgba(255, 255, 255, 0) 80%) repeat scroll 0 0 rgba(0, 0, 0, 0);\"><\/div><\/div><div class=\"fusion-builder-row fusion-builder-row-inner fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"width:104% !important;max-width:104% !important;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column_inner fusion-builder-nested-column-0 fusion_builder_column_inner_1_1 1_1 fusion-flex-column\" style=\"--awb-padding-top:15px;--awb-padding-right:15px;--awb-padding-bottom:15px;--awb-padding-left:15px;--awb-bg-color:#f2f2f2;--awb-bg-color-hover:#f2f2f2;--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-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-2 fusion-sep-none fusion-title-text fusion-title-size-paragraph\" style=\"--awb-font-size:var(--awb-custom_typography_6-font-size);\"><p class=\"fusion-title-heading title-heading-left title-heading-tag fusion-responsive-typography-calculated\" style=\"font-family:var(--awb-custom_typography_6-font-family);font-weight:var(--awb-custom_typography_6-font-weight);font-style:var(--awb-custom_typography_6-font-style);margin:0;font-size:1em;letter-spacing:var(--awb-custom_typography_6-letter-spacing);text-transform:var(--awb-custom_typography_6-text-transform);--fontSize:16;--minFontSize:16;line-height:var(--awb-custom_typography_6-line-height);\"><p>This high-level toolkit will help you make the most of the many opportunities for part-time, full-time, and remote work available to people living with a rare disease. This guide also includes tips and advice from rare disease patients and experts to help you make smart decisions and avoid common and costly mistakes.\u00a0<strong><br \/>\n<\/strong><\/p><\/p><\/div><ul style=\"--awb-margin-top:10px;--awb-margin-bottom:10px;--awb-iconcolor:var(--awb-color4);--awb-line-height:27.2px;--awb-icon-width:27.2px;--awb-icon-height:27.2px;--awb-icon-margin:11.2px;--awb-content-margin:38.4px;--awb-circlecolor:rgba(255,255,255,0);--awb-circle-yes-font-size:14.08px;\" class=\"fusion-checklist fusion-checklist-1 fusion-checklist-default type-icons\"><li class=\"fusion-li-item\" style=\"\"><span class=\"icon-wrapper circle-yes\"><i class=\"fusion-li-icon fa-check fas\" aria-hidden=\"true\"><\/i><\/span><div class=\"fusion-li-item-content\">\n<p><a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2023\/01\/FAIR-4_Understanding-Career-Employment.pdf\" target=\"_blank\" rel=\"noopener\"><strong>Understanding Career Opportunities and Employment Benefits<\/strong><\/a><\/p>\n<\/div><\/li><\/ul><\/div><\/div><\/div><\/div><\/div><\/div><\/div>\n<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-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-2 fusion_builder_column_1_1 1_1 fusion-flex-column\" style=\"--awb-overflow:hidden;--awb-bg-color:var(--awb-color4);--awb-bg-color-hover:var(--awb-color4);--awb-bg-size:cover;--awb-box-shadow:0px 0px 4px 0px var(--awb-color2);;--awb-border-radius:5px 5px 5px 5px;--awb-width-large:100%;--awb-margin-top-large:20px;--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-3 fusion-sep-none fusion-title-text fusion-title-size-three\" style=\"--awb-text-color:var(--awb-color1);--awb-margin-right:10px;--awb-margin-bottom:10px;--awb-margin-left:15px;--awb-font-size:var(--awb-custom_typography_3-font-size);\"><h3 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"font-family:var(--awb-custom_typography_3-font-family);font-weight:var(--awb-custom_typography_3-font-weight);font-style:var(--awb-custom_typography_3-font-style);margin:0;font-size:1em;letter-spacing:var(--awb-custom_typography_3-letter-spacing);text-transform:var(--awb-custom_typography_3-text-transform);--fontSize:26;--minFontSize:26;line-height:var(--awb-custom_typography_3-line-height);\">A Step-by-Step Guide for Obtaining a Wheelchair<\/h3><\/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-shadow\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color1);background:radial-gradient(ellipse at 50% -50% , var(--awb-color1) 0px, rgba(255, 255, 255, 0) 80%) repeat scroll 0 0 rgba(0, 0, 0, 0);background:-webkit-radial-gradient(ellipse at 50% -50% , var(--awb-color1) 0px, rgba(255, 255, 255, 0) 80%) repeat scroll 0 0 rgba(0, 0, 0, 0);background:-moz-radial-gradient(ellipse at 50% -50% , var(--awb-color1) 0px, rgba(255, 255, 255, 0) 80%) repeat scroll 0 0 rgba(0, 0, 0, 0);background:-o-radial-gradient(ellipse at 50% -50% , var(--awb-color1) 0px, rgba(255, 255, 255, 0) 80%) repeat scroll 0 0 rgba(0, 0, 0, 0);\"><\/div><\/div><div class=\"fusion-builder-row fusion-builder-row-inner fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"width:104% !important;max-width:104% !important;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column_inner fusion-builder-nested-column-1 fusion_builder_column_inner_1_1 1_1 fusion-flex-column\" style=\"--awb-padding-top:15px;--awb-padding-right:15px;--awb-padding-bottom:15px;--awb-padding-left:15px;--awb-bg-color:#f2f2f2;--awb-bg-color-hover:#f2f2f2;--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-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-4 fusion-sep-none fusion-title-text fusion-title-size-paragraph\" style=\"--awb-font-size:var(--awb-custom_typography_6-font-size);\"><p class=\"fusion-title-heading title-heading-left title-heading-tag fusion-responsive-typography-calculated\" style=\"font-family:var(--awb-custom_typography_6-font-family);font-weight:var(--awb-custom_typography_6-font-weight);font-style:var(--awb-custom_typography_6-font-style);margin:0;font-size:1em;letter-spacing:var(--awb-custom_typography_6-letter-spacing);text-transform:var(--awb-custom_typography_6-text-transform);--fontSize:16;--minFontSize:16;line-height:var(--awb-custom_typography_6-line-height);\">Getting a proper wheelchair is so important for enhancing your function, maintaining comfort and improving your independence. It is a big decision\u2026so you want to be well informed throughout the entire process.<\/p><\/div><ul style=\"--awb-margin-top:10px;--awb-margin-bottom:10px;--awb-iconcolor:var(--awb-color4);--awb-line-height:27.2px;--awb-icon-width:27.2px;--awb-icon-height:27.2px;--awb-icon-margin:11.2px;--awb-content-margin:38.4px;--awb-circlecolor:rgba(255,255,255,0);--awb-circle-yes-font-size:14.08px;\" class=\"fusion-checklist fusion-checklist-2 fusion-checklist-default type-icons\"><li class=\"fusion-li-item\" style=\"\"><span class=\"icon-wrapper circle-yes\"><i class=\"fusion-li-icon fa-check fas\" aria-hidden=\"true\"><\/i><\/span><div class=\"fusion-li-item-content\">\n<p>\"<strong><a href=\"https:\/\/askus-resource-center.unitedspinal.org\/index.php?pg=kb.book&amp;id=41\" target=\"_blank\" rel=\"noreferrer noopener\">Mobility Map<\/a><\/strong>\u201d \u2013 an online step by step guide on how to get \u201cThe Right Wheelchair\u201d for\u00a0<em>your<\/em>\u00a0specific needs!<\/p>\n<\/div><\/li><\/ul><\/div><\/div><\/div><\/div><\/div><\/div><\/div>\n<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-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-3 fusion_builder_column_1_1 1_1 fusion-flex-column\" style=\"--awb-overflow:hidden;--awb-bg-color:var(--awb-color4);--awb-bg-color-hover:var(--awb-color4);--awb-bg-size:cover;--awb-box-shadow:0px 0px 4px 0px var(--awb-color2);;--awb-border-radius:5px 5px 5px 5px;--awb-width-large:100%;--awb-margin-top-large:20px;--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-5 fusion-sep-none fusion-title-text fusion-title-size-three\" style=\"--awb-text-color:var(--awb-color1);--awb-margin-right:10px;--awb-margin-bottom:10px;--awb-margin-left:15px;--awb-font-size:var(--awb-custom_typography_3-font-size);\"><h3 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"font-family:var(--awb-custom_typography_3-font-family);font-weight:var(--awb-custom_typography_3-font-weight);font-style:var(--awb-custom_typography_3-font-style);margin:0;font-size:1em;letter-spacing:var(--awb-custom_typography_3-letter-spacing);text-transform:var(--awb-custom_typography_3-text-transform);--fontSize:26;--minFontSize:26;line-height:var(--awb-custom_typography_3-line-height);\">Caring for Yourself and Your Children<\/h3><\/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-shadow\" style=\"--awb-height:20px;--awb-amount:20px;--awb-sep-color:var(--awb-color1);background:radial-gradient(ellipse at 50% -50% , var(--awb-color1) 0px, rgba(255, 255, 255, 0) 80%) repeat scroll 0 0 rgba(0, 0, 0, 0);background:-webkit-radial-gradient(ellipse at 50% -50% , var(--awb-color1) 0px, rgba(255, 255, 255, 0) 80%) repeat scroll 0 0 rgba(0, 0, 0, 0);background:-moz-radial-gradient(ellipse at 50% -50% , var(--awb-color1) 0px, rgba(255, 255, 255, 0) 80%) repeat scroll 0 0 rgba(0, 0, 0, 0);background:-o-radial-gradient(ellipse at 50% -50% , var(--awb-color1) 0px, rgba(255, 255, 255, 0) 80%) repeat scroll 0 0 rgba(0, 0, 0, 0);\"><\/div><\/div><div class=\"fusion-builder-row fusion-builder-row-inner fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"width:104% !important;max-width:104% !important;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column_inner fusion-builder-nested-column-2 fusion_builder_column_inner_1_1 1_1 fusion-flex-column\" style=\"--awb-padding-top:15px;--awb-padding-right:15px;--awb-padding-bottom:15px;--awb-padding-left:15px;--awb-bg-color:#f2f2f2;--awb-bg-color-hover:#f2f2f2;--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-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-6 fusion-sep-none fusion-title-text fusion-title-size-paragraph\" style=\"--awb-font-size:var(--awb-custom_typography_6-font-size);\"><p class=\"fusion-title-heading title-heading-left title-heading-tag fusion-responsive-typography-calculated\" style=\"font-family:var(--awb-custom_typography_6-font-family);font-weight:var(--awb-custom_typography_6-font-weight);font-style:var(--awb-custom_typography_6-font-style);margin:0;font-size:1em;letter-spacing:var(--awb-custom_typography_6-letter-spacing);text-transform:var(--awb-custom_typography_6-text-transform);--fontSize:16;--minFontSize:16;line-height:var(--awb-custom_typography_6-line-height);\">This toolkit is designed as a guide for parents who live with a rare disease. In addition to recognizing the emotional impact of being both a caregiver and a patient, this toolkit provides guidance to parents on the practical elements of living with a rare disease, such as employment, insurance, applying for social benefits, and everyday health management.<\/p><\/div><ul style=\"--awb-margin-top:10px;--awb-margin-bottom:10px;--awb-iconcolor:var(--awb-color4);--awb-line-height:27.2px;--awb-icon-width:27.2px;--awb-icon-height:27.2px;--awb-icon-margin:11.2px;--awb-content-margin:38.4px;--awb-circlecolor:rgba(255,255,255,0);--awb-circle-yes-font-size:14.08px;\" class=\"fusion-checklist fusion-checklist-3 fusion-checklist-default type-icons\"><li class=\"fusion-li-item\" style=\"\"><span class=\"icon-wrapper circle-yes\"><i class=\"fusion-li-icon fa-check fas\" aria-hidden=\"true\"><\/i><\/span><div class=\"fusion-li-item-content\">\n<p><a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2023\/01\/FAIR-2_Caring-for-Yourself-and-Your-Children.pdf\" target=\"_blank\" rel=\"noopener\"><strong>Caring for Yourself and Your Children<\/strong><\/a><\/p>\n<\/div><\/li><\/ul><\/div><\/div><\/div><\/div><\/div><\/div><\/div>\n<\/p>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":0,"parent":6618,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-6642","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Patient &amp; 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