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Search Results: MCH Organizations

This list of organizations is drawn from the MCH Organizations Database. Contact information is the most recent known to the MCH Digital Library.

Displaying records 1 through 2 (2 total).

Families of Spinal Muscular Atrophy (FSMA)

Annotation: Established in 1984, Families of Spinal Muscular Atrophy (FSMA) is a national organization that funds for research and promotes public awareness of Werdnig-Hoffmann disease, Kugelberg-Welander disease, and Aran-Duchenne adult progressive spinal muscular atrophy (SMA). Services include a referral system (in conjunction with the national SMA registry at Indiana University), a parent network, an equipment pool, and a resource library of print and audiovisual materials. Publications include a quarterly newsletter. The organization provides materials in Spanish and French. FSMA also sponsors conferences.

Keywords: Aran-Duchenne type (Adult progressive spinal muscular atrophy), Benign congenital hypotonia, Kugelberg-Welander disease, Neuromuscular diseases, Patient identification, Research, Education, Spinal muscular atrophy, Werdnig-Hoffmann disease

Muscular Dystrophy Association (MDA)

Annotation: The Muscular Dystrophy Association (MDA) provides a comprehensive patient and community service program. MDA's nationwide network of over 200 hospital affiliated clinics provides access to top health professionals who can advise about the medical management of neuromuscular diseases affecting children and adults. Other services include assistance with the purchase and repair of wheelchairs or leg braces and a summer camp for youngsters. The Association also supports an international research program seeking treatments and cures for neuromuscular disorders. Referrals, reference information, and publications are provided to consumers. Publications include a wide variety of brochures and a bi-monthly newsletter, Quest.. Audiovisual materials are available. Some materials are available in Spanish. The Association also sponsors conferences and workshops.

Keywords: Acid Maltase Deficiency, Becker Muscular Dystrophy, Benign Congenital Hypotonia, Duchenne Muscular Dystrophy, Friedreichs Ataxia, Muscular Dystrophy, Spinal Muscular Atrophy, Werdnig-Hoffmann disease
   

The MCH Digital Library is one of six special collections at Geogetown University, the nation's oldest Jesuit institution of higher education. It is supported in part by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under award number U02MC31613, MCH Advanced Education Policy with an award of $700,000/year. The library is also supported through foundation and univerity funding. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.