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.
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.
c/o BBRI R353
64 Grove St.
Watertown, MA 02472
National. 200+ chapters. Founded 1950. Provides comprehensive health care, support services,, advocacy and education. 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.
Muscular Dystrophy Association
3300 E. Sunrise Dr.
Tucson, AZ 85718-3299
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.
Parent Project for MD Research
401 Hackensack Ave., 9th Floor
Hackensack, NJ 07601
Voice: 1-800-714-5437 or 201-944-9985
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.
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