Muscular Dystrophy: For Patients and Consumers

General Information

• The NINDS Muscular Dystrophy Information Page contains, in addition to current information about muscular dystrophy (MD), links to other federal agencies involved in MD research and private organizations.
• The MedlinePlus webpage on Muscular Dystrophy contains links to a series of related articles with detailed information about various tests used in the diagnosis and treatment of MD, types of MD, and the care of MD patients.

Services, Resources, and Support

• The Muscular Dystrophy Association provides a range of supports and resources for MD patients and their families, in addition to advocating for patients and funding research into causes and treatments. A sampling of these resources is linked here:
  1. Quest: MDA’s Research & Health Magazine
  2. MDA/ALS Newsmagazine
  3. Facts About Duchenne & Becker Muscular Dystrophies (PDF - 650 KB)
  4. Facts About Facioscapulohumeral Muscular Dystrophy (PDF - 631 KB)
  5. Learning to Live With Neuromuscular Disease: A Message for Parents (PDF - 705 KB)
• The Parent Project Muscular Dystrophy focuses its resources on Duchenne MD. It offers detailed information about Duchenne, its diagnosis, treatments, and care and management. The project sponsors annual educational conferences for families and advocates for and supports research on Duchenne MD.
  • Read about coping with emotional issues.
• The FSH Society For Patients webpage contains information on physicians, health conditions, peer-to-peer support, genetics, diagnostic tests, frequently asked questions about clinical research, and much more.
• The Nemours Foundation—sponsored KidsHealth page on Muscular Dystrophy contains detailed information on symptoms, diagnosis, types of MD, and care and treatment of this disorder. The site also has information about the disease written at a level for children and teenagers.
• Muscular Dystrophy Association
  The association funds research and provides resources for families coping with MD.
  • Find services (PDF - 852 KB)
  • Read Learning to Live With Neuromuscular Disease: A Message for Parents (PDF - 706 KB)

Please note: Links to organizations and information included on this page do not indicate endorsement from the NICHD, NIH, or HHS.