Search Results: MCH Organizations

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

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: Chanarin-Dorfman Syndrome, Chondrodysplasia Punctata Syndromes, Colloidion baby, Darier disease, Epidermal Nevus syndrome, Epidermolytic Hyperkeratosis, Erythrokeratodermas, Ichthyosis, 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

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

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