Duchenne Map helps families affected by Duchenne and Becker muscular dystrophy find care, clinical trials, registries, and patient organisations — anywhere in the world
Duchenne Map helps families affected by Duchenne and Becker muscular dystrophy find care, clinical trials, registries, and patient organisations — anywhere in the world. Living with a rare disease often means searching alone. Where is the nearest specialised clinic? Which research study is recruiting? Which patient organisation supports families in our country? Duchenne Map brings these answers together on one map, free for everyone. WHAT YOU CAN DO • Explore a global map of care centres, clinical trial sites, patient registries, and patient organisations supporting people with Duchenne and Becker muscular dystrophy. • Filter by your specific situation — mutation type, exon skipping target, age range, recruiting status, and more. • View detailed information for each trial or centre, including eligibility criteria, recruitment status, and contact details. • Save your profile to return easily to the resources that matter to you. • Run a patient organisation or care centre? Register it directly through the app so other families can find you. WHO IT'S FOR Duchenne Map is built primarily for patients, parents, and caregivers — but clinicians, researchers, and patient advocacy groups will find it useful too. Anyone working to connect a family with the right resources is welcome. ABOUT THE DUCHENNE DATA FOUNDATION Duchenne Map is a project of the Duchenne Data Foundation, a non-profit organisation working to improve the lives of people with Duchenne and Becker muscular dystrophy by making data, knowledge, and connections easier to access. The app is completely free, contains no advertising, and we do not sell user data. A NOTE ON WHAT THIS APP IS NOT Duchenne Map is an information and signposting tool. It is not a medical service, does not provide diagnosis or treatment, and is not a substitute for professional medical advice. Always speak with a qualified healthcare professional for medical decisions. Have a clinic, registry, or organisation that should be on the map? Contact us through the app or visit duchennedatafoundation.org.
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