Search Results: MCH Organizations

Annotation: The National Tay-Sachs and Allied Diseases Association (NTSAD) is dedicated to the treatment and prevention of Tay-Sachs and related genetic diseases, and to providing information and support services to individuals and families affected by these diseases, as well as the public at large. Publications include Tay-Sachs Is (English and Russian),Services to Families, What Every Family Should Know, an international Directory of Tay-Sachs Carrier Testing Facilities, a home care manual and a biannual newsletter, Breakthrough. Audiovisual materials include For My Sister, Elyssa and Jewish Genetic Diseases. NTSAD also sponsors conferences.

Keywords: A-Beta-Lipoproteinemia, Fabrys disease, Krabbe disease, Lysosomal diseases, Metabolic diseases, Nervous systems diseases, Niemann Pick disease, Sandhoff disease, Tay Sachs disease

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