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Muscular Dystrophy

Self Help Clearinghouse

This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.

FSH Society, Inc.

National network. Founded 1991. Support, information, education, networking and advocacy for individuals with facioscapulohumeral muscular dystrophy, facioscapulohumeral disease, or FSHD (aka Landouzy-Dejerine muscular dystrophy). Purpose is to increase awareness, understanding and conduct research and education on the most prevalent muscular dystrophy affecting one half-million individuals worldwide. Funds research through grants to researchers. Acts as a clearinghouse for information on the FSHD disorder and on potential drugs and devices designed to alleviate the effects of the disease. Newsletter, support group meetings, conferences and literature.
Write:
BBRI, c/o Daniel Perez
R353, 64 Grove St.
Watertown, MA 02472
Voice: 617-658-7878
Fax: 617-658-7879
Website: http://www.fshsociety.org
E-mail: info@fshsociety.org
Verified: 8/2/2012

Parent Project for Muscular Dystrophy Research, Inc.

International network. Founded 1994. Support for parents of children with Duchenne and Becker muscular dystrophy. To improve the treatment, quality of life and long-term outlook for all individuals affected by DMD through research, advocacy, education and compassion. Provides user-friendly website with online forums, scientific and legislative conferences, newsletters, information on newest diagnosis tests, standards of care and research strategies.
Write:
Parent Project for MD Research
401 Hackensack Ave., 9th Floor
Hackensack, NJ 07601
Voice: 1-800-714-5437 or 201-944-9985
Fax: 201-944-9987
Website: http://www.parentprojectmd.org
E-mail: info@parentprojectmd.org
Verified: 7/25/2012

Muscular Dystrophy Association

National. 200+ chapters. Founded 1950. Provides comprehensive medical services to persons with neuromuscular disease. Supports research into the causes, cures and treatments of neuromuscular disorders. Support programs include some 200 MDA-facilitated support groups located throughout the United States, MDA's online care coordination tool myMuscleTeam, scheduled online chat sessions and active community on MDA's Facebook, Twitter and YouTube pages.
Write:
Muscular Dystrophy Assn.
3300 E. Sunrise Dr.
Tucson, AZ 85718-3299
Voice: 1-800-572-1717
Fax: 520-529-5300
Website: http://www.mda.org
E-mail: mda@mdausa.org
Verified: 8/14/2012

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