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Strengthening the evidence for maternal and child health programs

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 2 (2 total).

Center for Jewish Genetic Diseases

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

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


This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. 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.