Facioscapulohumeral Muscular Dystrophy / Landouzy-Dejerine Muscular Atrophy
National network. Founded 1991. Support, information, education, networking and advocacy for individuals with facioscapulohumeral disease (aka Landouzy-Dejerine muscular dystrophy). Purpose is to increase awareness, understanding and conduct research and education on the most prevalent muscular dystrophy. 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
3 Westwood Rd.
Lexington, MA 02420
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