{"id":10926,"date":"2025-02-28T11:29:11","date_gmt":"2025-02-28T19:29:11","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?p=10926"},"modified":"2026-02-19T14:28:11","modified_gmt":"2026-02-19T22:28:11","slug":"global-alliance-60-myotonic-dystrophy-organizations-unites-rare-disease-day-2025","status":"publish","type":"post","link":"https:\/\/myotonic.org\/de\/global-alliance-60-myotonic-dystrophy-organizations-unites-rare-disease-day-2025\/","title":{"rendered":"Global Alliance of 60+ Myotonic Dystrophy Organizations Unites for Rare Disease Day 2025"},"content":{"rendered":"

Click here to download this press release as a printable PDF.<\/a><\/p>\n

PRESS RELEASE<\/strong><\/p>\n

Canada Contact Name: Homira Osman
\nCanada Contact Email:\u00a0Homira.osman@muscle.ca<\/a><\/p>\n

Japan Contact Name: Midori Senoo
\nJapan Contact Email:\u00a0international@dm-family.net<\/a><\/p>\n

UK Contact Names: Stephen Uncles
\nUK Contact Emails:\u00a0stephen.uncles@sky.com<\/a><\/p>\n

US Contact Name: Tanya Stevenson
\nUS Contact Email:\u00a0Tanya.Stevenson@myotonic.org<\/a><\/p>\n

FOR IMMEDIATE RELEASE<\/strong><\/p>\n

Global Alliance of 60+ Myotonic Dystrophy Organizations Unites for Rare Disease Day 2025<\/h2>\n

February 28, 2025, Worldwide<\/strong>\u00a0\u2013 The\u00a0Global Alliance for Myotonic Dystrophy Awareness<\/a>\u00a0(Global Alliance) proudly joins the global rare disease community in commemorating Rare Disease Day on February 28th, 2025. With over 60 organizations collaborating worldwide, the Alliance continues to advance understanding, care, and research for myotonic dystrophy (DM), one of the most prevalent rare genetic disorders.<\/p>\n

Myotonic dystrophy (DM)<\/a>\u00a0is a progressive, inherited disorder that impacts muscle strength, respiratory systems, heart function, and cognitive abilities, among other areas. Despite its prevalence, DM remains underdiagnosed and misunderstood, with no current cure or disease-modifying treatments available. The Global Alliance is committed to addressing these gaps through collaboration and education.<\/p>\n

In 2025, the Global Alliance reaffirms its commitment to two joint areas of focus:<\/p>\n

    \n
  1. Raising awareness and providing education among clinical care teams.<\/strong><\/li>\n
  2. Enhancing clinical trial readiness for participants.<\/strong><\/li>\n<\/ol>\n

    These priorities address the critical challenges faced by individuals and families affected by myotonic dystrophy. In line with its renewed priorities, the Global Alliance will continue working with healthcare providers to enhance awareness and understanding of DM, its symptoms, and\u00a0available care guidelines<\/a>. The aim of this education is to\u00a0reduce delays in diagnosis<\/a>\u00a0and improve the quality of care provided to individuals affected by the disease.<\/p>\n

    Muscular Dystrophy Canada, member of the Global Alliance, recently launched\u00a0an initiative to improve access to genetic testing<\/a>\u00a0for individuals impacted by myotonic dystrophy. This groundbreaking effort aims to address one of the key barriers to timely diagnosis and participation in research. „Genetic testing is the cornerstone of understanding and managing myotonic dystrophy, and improving access will empower individuals and families with critical information,“ said Dr. Homira Osman, Vice-President of Research and Public Policy at\u00a0Muscular Dystrophy Canada<\/a>. „By ensuring equitable access to testing, we can pave the way for earlier diagnoses, better care, and greater inclusion in clinical trials. Together, we\u2019re making strides toward meaningful change for the DM community.\u201d Muscular Dystrophy Canada\u2019s new initiative embodies the Global Alliance\u2019s shared areas of focus by increasing awareness among clinical care teams while also helping those living with DM to get necessary information about clinical trials.<\/p>\n

    The Global Alliance continues work to prepare participants around the globe for clinical trials, which are crucial research studies testing treatments and therapies for myotonic dystrophy. The Global Alliance is dedicated to improving access to trial information and providing support for those interested in participating, while also advocating for inclusive and accessible trial designs that accommodate the diverse needs of the DM community.<\/p>\n

    „Myotonic dystrophy registries play an essential role in bridging the gap between patients and\u00a0clinical trials<\/a>,“ said Helen Walker, Registry Curator for the\u00a0UK DM Patient Registry<\/a>. „By collecting and maintaining accurate data shared by patients, registries not only help researchers understand the disease better but also ensure that patients are aware of and prepared for opportunities to participate in trials and other research opportunities. This is a vital step toward developing effective treatments and improving quality of life for the DM community.“<\/p>\n

    Dr. Andy Berglund, Director of the\u00a0RNA Institute at the University at Albany<\/a>, highlighted the growing momentum in DM research: „The strides being made in myotonic dystrophy research would not be possible without the collective efforts of patients, clinicians, and advocacy groups. The renewed focus on clinical trial readiness ensures that the DM community is well-positioned to benefit from emerging therapies. At the RNA Institute, we are honored to be part of the Global Alliance to drive progress and create hope for those living with DM.“<\/p>\n

    The Global Alliance invites everyone\u2014individuals living with DM, families, healthcare professionals, industry, and researchers\u2014to join in raising awareness and advocating for those living with myotonic dystrophy on Rare Disease Day. This day provides a unique opportunity to unite and amplify the voices of those impacted by DM. Activities can include sharing personal stories with loved ones, engaging policymakers to\u00a0advocate for research funding and improved care<\/a>, providing clinical\u00a0care guidelines<\/a>\u00a0to healthcare providers, or even\u00a0hosting fundraising events<\/a>.<\/p>\n

    By working together, we can build a brighter future for the DM community.<\/strong><\/p>\n

    For more information, visit the\u00a0Global Alliance for Myotonic Dystrophy Awareness<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"

    Click here to download this press release as a printable PDF. PRESS RELEASE Canada Contact Name: Homira Osman Canada Contact Email:\u00a0Homira.osman@muscle.ca Japan Contact Name: Midori Senoo Japan Contact Email:\u00a0international@dm-family.net UK Contact Names: Stephen Uncles UK Contact Emails:\u00a0stephen.uncles@sky.com US Contact Name: Tanya Stevenson US Contact Email:\u00a0Tanya.Stevenson@myotonic.org FOR IMMEDIATE RELEASE Global Alliance of 60+ Myotonic Dystrophy Organizations […]<\/p>\n","protected":false},"author":7,"featured_media":10654,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[70],"tags":[104],"class_list":["post-10926","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-international-dm-day"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/posts\/10926","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/comments?post=10926"}],"version-history":[{"count":0,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/posts\/10926\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/media\/10654"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/media?parent=10926"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/categories?post=10926"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/tags?post=10926"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}