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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

FSH Society, Inc.

a/k/a: FSHSI


450 Bedford Street
Lexington, MA 02420



800 Number




Email Address




The FSH (facioscapulohumeral) Society, Inc. (FSHSI) is a voluntary, non-profit organization created to address issues and needs specifically related to facioscapulohumeral muscular dystrophy, commonly called FSH or FSHD. This is a rare inherited muscle disease the main effect of which is progressive weakening and loss of skeletal muscle. Established in 1989, the FSH Society is dedicated to encouraging and promoting research into the nature of this disease through solicitation of grants and contributions from private foundations, the pharmaceutical industry, and other sources. The society also seeks to develop educational programs aimed at the medical community, government bodies, and the public. It accumulates and disseminates timely information about FSHD and actively cooperates with related organizations to foster communication among all interested parties. In addition, the FSH Society promotes professional education; provides appropriate referrals including support groups; and promotes patient advocacy and legislation beneficial to individuals with FSHD. It offers a variety of educational and support materials including brochures, fact sheets, and a newsletter. The FSH Society also provides grants for research.

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