Muscular Dystrophy (MD) Resources

• Centers for Disease Control and Prevention (CDC)
  CDC’s MD page includes stories from people living with MD, data and statistics, and links to other resources.
• Facioscapulohumeral Muscular Dystrophy (FSHD) Society 
  The society is a grassroots network of FSHD patients, their families, and research activists. Its “Newly Diagnosed?” webpage contains information on physicians, health conditions, peer-to-peer support, genetics, diagnostic tests, frequently asked questions about clinical research, and more.
• MedlinePlus: Muscular Dystrophy
  The MedlinePlus page on MD 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.
• Muscular Dystrophy Association (MDA)
  MDA funds research and 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:
  • Quest: MDA’s Research & Health Magazine
  • MDA/ALS Newsmagazine
  • Facts About Duchenne & Becker Muscular Dystrophies – English Version (PDF 650 KB) 
    Spanish Version (PDF 783 KB)
  • Facts About Facioscapulohumeral Muscular Dystrophy – English Version(PDF 631 KB) 
    Spanish Version (PDF 622 KB)
  • Innovations in Care
• National Institute of Neurological Disorders and Stroke (NINDS)
  NINDS, part of NIH, provides a Muscular Dystrophy Information Page with current information about MD as well as links to other federal agencies and private organizations involved in MD research.
• Parent Project Muscular Dystrophy (PPMD)
  The PPMD 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, including a pilot study of newborn screening for the condition. Learn ways to get support .

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

• Senator Paul D. Wellstone Muscular Dystrophy Specialized Research Centers 
  The centers, formerly the Muscular Dystrophy Cooperative Research Centers, provide research collaboration, training, and information about MD for basic and clinical researchers and include one or more scientific research resource cores. NICHD-funded centers are supported through the Intellectual and Developmental Disabilities Branch (IDDB).
• The Eunice Kennedy Shriver Intellectual & Developmental Disabilities Research Centers (EKS-IDDRCs) 
  This program supports research to advance understanding of a variety of conditions and topics related to intellectual and developmental disabilities. NICHD’s Intellectual and Developmental Disabilities Branch (IDDB) funds the program, which includes 15 research centers, located at universities and children’s hospitals throughout the country.
• Clinical Pharmacology Training Network (CPTN) 
  The Specialized Centers in RPDP, funded through NICHD’s Obstetric and Pediatric Pharmacology and Therapeutics Branch, aim to advance understanding of pediatric drug response through research, training, and outreach.
• National Center for Medical Rehabilitation Research (NCMRR) 
  Through basic, translational, and clinical research, NCMRR fosters development of scientific knowledge needed to enhance the health, productivity, independence, and quality of life of people with physical disabilities. NCMRR also coordinates rehabilitation research and activities across NIH, including leading the 2021 revision of the NIH Research Plan on Rehabilitation (PDF 1.51 MB).
• CDC: Muscular Dystrophy Research and Tracking 
  The CDC-funded Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) collects information on MD to help improve care for people with the condition.
• FSHD Society  
  The society’s site includes information about its international research consortium, research contacts, tools and resources, and grant opportunities.
• Muscular Dystrophy Association  
  The association is the largest nongovernmental funder of research on neuromuscular diseases. Its Hope Through Research page has information on current clinical trials, ongoing research, research grant programs, and conferences on MD.
• Muscular Dystrophy Coordinating Committee (MDCC) 
  The MDCC coordinates NIH and other federal research activities relevant to MD.
• National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) 
  NIAMS supports research on effective treatments for MD. NIAMS partners with the Center for Gene Therapy at Nationwide Children’s Hospital .
• National Institute of Neurological Disorders and Stroke (NINDS) 
  NINDS conducts and supports research on MD. The institute’s Muscular Dystrophy Information Page includes links to clinical trials.
• National Registry for Myotonic Dystrophy (DM) & Facioscapulohumeral Dystrophy (FSHD)  
  The registry advances research in DM and FSHD by helping patients participate in clinical studies.
• Parent Project Muscular Dystrophy: Research (PPMD)  
  The PPMD maintains information about funded research, clinical trials, and grantee resources. Its research page contains research news and information on research strategies, agents already in the therapeutic pipeline, and drug development.

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