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Muscular Dystrophy

Self Help Clearinghouse

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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

The above information was "verified" as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information.

For additional information on self-help groups, please visit the American Self-Help Group Clearinghouse web site at http://www.mentalhelp.net/selfhelp

If you find information that is not current, please contact American Self-Help Group Clearinghouse at: admin@selfhelpgroups.org

Copyright © 2012 American Self-Help Group Clearinghouse. All rights reserved.

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