- International Myotonic Dystrophy Organization
 - Nonprofit organisation dedicated to provide resources, information, and support for the patients and their families. Site includes medical information, assistance available, genetic info, disability benefits, and much more. - Myotonic Dystrophy Foundation
- Homepage of the patient advocacy group dedicated to leading and mobilising resources toward effective management, treatment, and cure for myotonic dystrophy, a common form of muscular dystrophy.
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