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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 3 (3 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

National Niemann-Pick Disease Foundation (NNPDF)

Annotation: The National Niemann Pick Disease Foundation is a resource center for children, parents, and families affected by Niemann-Pick disease. The Foundation provides reference information to consumers, sponsors summer conferences for families, and publishes a newsletter. Informational packets are available as well.

Keywords: Nervous system diseases, Niemann Pick Disease, Parent groups

National Tay-Sachs and Allied Diseases Association (NTSAD)

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

   

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.