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 4 (4 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

Foundation for Ichthyosis and Related Skin Types (FIRST)

Annotation: The Foundation for Ichthyosis and Related Skin Types (FIRST) is a national non-profit organization dedicated to helping individuals and familes affected by ichthyosis. Ichthyosis is a rare genetic skin disease characterized by very dry, cracked, scaling, and thickened skin. The Foundation provides support, information, education, and advocacy for its members. The Foundation supports research into causes, treatment, and cures for ichthyosis. Informational brochures and booklets are available in English and Spanish. The Foundation also publishes a newsletter and sponsors conferences.

Keywords: Ichthyosis, Chanarin-Dorfman Syndrome, Chondrodysplasia Punctata Syndromes, Colloidion baby, Darier disease, Epidermal Nevus syndrome, Epidermolytic Hyperkeratosis, Erythrokeratodermas, Keratitis-Ichthyosis-Deafness (KID) syndrome, Multiple Sulfatase Deficiency, Palmoplantar Keratoderma syndromes, Peeling skin syndrome, Pityriasis Rubra Pilaris, Refsum disease, Rud syndrome, Skin diseases, Tay Sachs disease

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

United Leukodystrophy Foundation (ULF)

Annotation: The United Leukodystrophy Foundation (ULF) works to increase public awareness of the leukodystrophies. The foundation supports research and provides information, resource referrals, publications, and a communication network for affected families. Publications include Facts About Leukodystrophy, reprints on disease-specific subjects, a quarterly newsletter, and a catalog. Some materials are available in Spanish, Portuguese, and other languages. The Foundation holds an annual conference and is supported by donations.

Keywords: Adrenoleukodystrophy, Alexander', Canavan', Cerebrotendinous xanthomatosis, Globoid leukodystrophy (Krabbe disease), Metabolic diseases, Metachromatic leukodystrophy, Pelizaeus-Merzbacher disease, Refsum disease, Zellweger syndrome, s disease, s 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.