Facioscapulohumeral Muscular Dystrophy (FSHD) Society

Facioscapulohumeral Muscular Dystrophy (FSHD) Society
3 Westwood Road
Lexington,  MA  02420
Tel: 781-275-7781 781-860-0501
Fax: 781-860-0599
EMail: info@fshsociety.org
http://www.fshsociety.org

Description: Facilitates support groups, publishes a newsletter, organizes conferences and meetings, and awards research grants towards the prevention, cause and treatment of FacioScapuloHumeral muscular dystrophy worldwide. Provides public awareness of FSHD by providing information, referrals, education, and advocacy programs and services. Promotes collaborative research and collects and disseminates research information.

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National 501(c) tax-exempt organizations offer a comprehensive program of information and support services for patients and their families. They may offer patient and professional information and education materials, sponsor meetings and scientific workshops, fund research, and provide referrals to chapters and support groups.