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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 3 (3 total).

Foundation Fighting Blindness (FFB)

Annotation: The Foundation Fighting Blindness, Inc. (FFB) supports research aimed at preventions, treatments, and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of retinal degenerative diseases. FFB offers information and referral services for affected individuals and their families as well as for doctors and eye care professionals. The Foundation also provides comprehensive information kits on retinitis pigmentosa, macular degeneration, and usher syndrome. FFB's newsletter (In Focus) and its e-newsletter (In Sight) present articles on coping, research updates, and Foundation news. In Focus is published 3 times per year; In Sight is sent approximately 6 times per year. A national conference is usually held every other year.

Keywords: Retinitis pigmentosa, Bassen-Kornzweig Syndrome, Best disease, Blindness, Choroideremia, Fundraising, Gyrate atrophy, Information services, Laurence Moon Biedl Syndrome, Leber congenital amaurosis, Refsum disease, Stargardt disease, Usher Syndrome, Visiondisorders

Retinitis Pigmentosa International

Annotation: Retinitis Pigmentosa International offers referrals, peer support, and education. The organization has twenty chapters nationwide and operates a school for blind adults and sponsors conferences. Publications include a quarterly newsletter, brochures, research news items and videotapes. Through TheatreVision (description for the blind) major movies are becoming available to the blind community. RPI is actively involved nationally with organizations representing the blind, and offers a national radio program. Some materials are available in Spanish.

Keywords: Bassen-Kornzweig Syndrome, Best disease, Blindness, Choroideremia, Gyrate atrophy, Laurence Moon Biedl Syndrome, Leber congenital amaurosis, Refsum disease, Retinitis pigmentosa, Stargardt disease, Usher Syndrome, Vision disorders, Visually impaired

Texas Association of Retinitis Pigmentosa (TARP)

Annotation: The Texas Association of Retinitis Pigmentosa (TARP) provides information sharing, advocacy, referral, and emotional support services for people with retinitis pigmentosa, Usher syndrome, and other progressive visual and hearing conditions. The association provides referrals and reference information to consumers. Publications include four books on RP and Usher Syndrome II by author Dorothy Stiefel. A new publication (disk/book), Dealing with the Threat of Loss, is also available.

Keywords: Retinitis pigmentosa, Advocacy, Blindness, Deafness, Information services, Support groups, Texas, Usher syndrome, Vision disorder
   

The MCH Digital Library is one of six special collections at Geogetown University, the nation's oldest Jesuit institution of higher education. The library is supported through foundation, univerity, state, and federal 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 the U.S. Government. Note: web pages whose development was supported by federal government grants are being reviewed to comply with applicable Executive Orders.