Related Links

University of Rochester

DM and FSHD

• Fields Center for FSHD and Neuromuscular Research
• National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members
• Charles Thornton Lab

Other Neurology and Research Links:

• Clinical research at URMC
• University of Rochester Clinical & Translational Science Institute
• The Ernest J. Del Monte Neuromedicine Institute

• Information on conditions, treatments, and procedures
• Muscle Study Group
• URMC Neurology

National Institutes of Health

• Clinical trials.gov
• Medline
• Muscular Dystrophy Coordinating Committee
• NIAMS (National Institutes of Arthritis and Musculoskeletal and Skins Diseases)
• NINDS (National Institute of Neurological Disorders and Stroke)
• Office of Rare Diseases Research (ORDR)
• Wellstone MDCRC

Other Resources

The links below provide educational information related to muscular dystrophy.  Information from these resources does not necessarily represent the URMC Wellstone MDCRC, but, in general, fit with the goals of the center.  We welcome suggestions to include additional resources that would disseminate pertinent and educational information to patients with muscular dystrophy, family members, and care providers.

DNA Testing and Genetic Counseling Services

• Gene Reviews
• National Society of Genetic Counselors

MDA

• Muscular Dystrophy Association

Patient Advocacy Groups (United States)

• Friends of FSH Research
• FSH Society, Inc
• Myotonic Dystrophy Foundation

Patient Advocacy Groups (International)

• FSHD Europe
• FSHD Global Research Foundation
• International web-based Support / Advocacy Group for DM2
• Marigold Foundation
• Muscular Dystrophy Campaign
• Myotonic Dystrophy Support Group
• Stichting FSHD
• TREAT-NMD