Search Results: MCH Organizations

Annotation: The Center for Jewish Genetic Diseases (formerly the National Foundation for Jewish Genetic Diseases) at The Mount Sinai Medical Center is devoted to the study of diseases that affect Ashkenazi Jews. The Center's missions are: (1) to improve the diagnosis, treatment, and counseling of patients and their families suffering from Jewish genetic diseases and (2) to conduct intensive research to combat these inherited diseases. The Center publishes scientific articles, presents papers at national meetings, sponsors international meetings, and collaborates with other researchers in the process of making discoveries and developing therapies.

Keywords: Metabolic diseases, Bloom syndrome, Canavan disease, Familial dysautonomia, Gauchers disease, Information dissemination, Mucolipidosis, Niemann Pick disease, Public awareness materials, Tay Sachs disease, Torsion dystonia

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