Facio-Scapulo-Humeral Society, Inc.
64 Grove Street
Watertown, MA 02472
Tel: 617 658-7878
Fax: 617 658-7879
This is a voluntary not-for-profit organization created to address issues and needs specifically related to Facio-Scapulo-Humeral Muscular Dystrophy (FSHD), a rare inherited neuromuscular disorder. Established in 1989, the Facio-Scapulo-Humeral Society is dedicated to encouraging and promoting ongoing scientific and clinical research and development into the nature of Facio-Scapulo-Humeral Syndrome through solicitation of grants and contributions from private foundations, the pharmaceutical industry, and others. The Society also seeks to develop educational programs aimed at the medical community, government bodies, and the public. The Society accumulates and disseminates timely information about FSHD and actively cooperates with related organizations to foster communication among all interested parties. In addition, Facio-Scapulo-Humeral Society promotes professional education; provides appropriate referrals including to support groups; and promotes patient advocacy and legislation beneficial to individuals with FSHD. The Society offers a variety of educational and support materials including brochures, fact sheets, and a newsletter.