Skip Navigation

Strengthen the Evidence for Maternal and Child Health Programs

Sign up for MCHalert eNewsletter

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 5 (5 total).

Facio-Scapula-Humeral Society (FSH Society)

Annotation: The FSH Society, Incorporated, is a nonprofit volunteer health organization for information, education, funds and advocacy research on facioscapulohumeral muscular dystrophy (FSHD). The FSH Society offers assistance to patients, families, physicians, and other professionals interested in FSHD; provides information and referrals; publishes the FSH WATCH newsletter and FSH Society Patient Brochure on FSHD; and maintains patient support groups and networks. Often, FSHD problems are evident in early adolescence and impact every part of the school experience. Early signs in preschoolers are poor speech and, in some cases, bilateral sensori-neural hearing loss. The FSH Society is available to network families to deal with the unique situations imposed by this disease. The FSH Society sponsored a conference, the International Symposium on FacioScapuloHumeral Muscular Dystrophy in October 1998, in Denver Colorado, in conjunction with the American Society for Human Genetics. This was an opportunity for professional, families, and patients to obtain information about current research and treatment strategies. Further annual scientific and society meetings are planned.

Keywords: Muscular dystrophy

Howard Hughes Medical Institute (HHMI)

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

Myotubular Myopathy Resource Group

Annotation: Myotubular Myopathy Resource Group, previously known as X-Linked Myotubular Myopathy Resource Group, provides services to consumers that include referrals, publications, and reference information. The organization publishes a newsletter.

Keywords: Muscular Dystrophy

Society for Muscular Dystrophy Information International (SMDI International)

Annotation: The Society for Muscular Dystrophy (S.M.D.I. International) is a non-profit registered Canadian charity. The Society was formed to provide international information to help people help themselves by reducing the national and international isolation of people and organizations concerned with neuromuscular disorders/disabilities (muscular dystrophy and over 50 allied disorders). Services to consumers include referrals and publications. SMDI International publishes a newsletter.

Keywords: Muscular dystrophy

   

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.