{"id":169,"date":"2024-11-20T23:01:00","date_gmt":"2024-11-20T23:01:00","guid":{"rendered":"https:\/\/lgmdcab.org\/?p=169"},"modified":"2025-11-20T23:20:05","modified_gmt":"2025-11-20T23:20:05","slug":"diagnostic-and-care-guidelines-workshop-for-lgmd-r3-6-sarcoglycanopathies","status":"publish","type":"post","link":"https:\/\/lgmdcab.org\/index.php\/2024\/11\/20\/diagnostic-and-care-guidelines-workshop-for-lgmd-r3-6-sarcoglycanopathies\/","title":{"rendered":"Workshop for LGMD R3\u20136"},"content":{"rendered":"\n<h3 class=\"wp-block-heading\"><strong>Diagnostic and Care Guidelines Workshop for LGMD R3\u20136 (Sarcoglycanopathies)<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"><strong><br><\/strong>In November 2024, members of the LGMD Community Advisory Board (LGMD CAB) participated in an international workshop dedicated to developing new diagnostic and care guidelines for LGMD R3\u20136 (sarcoglycanopathies). This multi-day meeting brought together clinicians, researchers, early-career professionals, and critically patient representatives and advocates.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">For the LGMD CAB, this project aligned directly with our mission: ensuring that patient experience and real-world needs are embedded in research, clinical protocols, and decision-making. Our CAB members contributed to the preparatory online meetings, reviewed emerging insights, and participated onsite in Hoofddorp. Their role was to share lived experience, highlight challenges in diagnosis and long-term care, and stress the importance of psychological support, clear communication, and equitable access to multidisciplinary care.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Throughout the workshop, CAB participants helped shape key discussions on diagnostics, genetics, motor function, cardiopulmonary care, and emerging therapeutic strategies. The patient voice was essential in identifying gaps, particularly long diagnostic delays, lack of coordinated follow-up, and the need for international standards of care. This ensured that the final recommendations reflect clinical expertise&nbsp;<em>and<\/em>&nbsp;the realities faced by families worldwide.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The work resulted in an agreed diagnostic algorithm and evidence-informed care recommendations for clinicians, now published in&nbsp;<em>Neuromuscular Disorders<\/em>.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Read the full report here:<\/strong>&nbsp;<a href=\"https:\/\/www.enmc.org\/wp-content\/uploads\/2025\/10\/Full-report-WS-282-compressed.pdf\">Final Report<\/a> <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Diagnostic and Care Guidelines Workshop for LGMD R3\u20136 (Sarcoglycanopathies) In November 2024, members of the LGMD Community Advisory Board (LGMD CAB) participated in an international workshop dedicated to developing new diagnostic and care guidelines for LGMD R3\u20136 (sarcoglycanopathies). This multi-day meeting brought together clinicians, researchers, early-career professionals, and critically patient representatives and advocates. For the [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":171,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4],"tags":[],"class_list":["post-169","post","type-post","status-publish","format-standard","has-post-thumbnail","category-advisory"],"_links":{"self":[{"href":"https:\/\/lgmdcab.org\/index.php\/wp-json\/wp\/v2\/posts\/169","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/lgmdcab.org\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/lgmdcab.org\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/lgmdcab.org\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/lgmdcab.org\/index.php\/wp-json\/wp\/v2\/comments?post=169"}],"version-history":[{"count":3,"href":"https:\/\/lgmdcab.org\/index.php\/wp-json\/wp\/v2\/posts\/169\/revisions"}],"predecessor-version":[{"id":173,"href":"https:\/\/lgmdcab.org\/index.php\/wp-json\/wp\/v2\/posts\/169\/revisions\/173"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/lgmdcab.org\/index.php\/wp-json\/wp\/v2\/media\/171"}],"wp:attachment":[{"href":"https:\/\/lgmdcab.org\/index.php\/wp-json\/wp\/v2\/media?parent=169"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/lgmdcab.org\/index.php\/wp-json\/wp\/v2\/categories?post=169"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/lgmdcab.org\/index.php\/wp-json\/wp\/v2\/tags?post=169"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}