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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

Mucolipidosis IV Foundation

Annotation: The Mucolipidosis IV Foundation was established by concerned parents of children with mucolipidosis IV to increase public awareness of the disease and to raise funds for research. The foundation supports research on treatment and cure, improved diagnostic measures, and development of a carrier screening test for mucolipidosis IV.

Keywords: Medical research, Metabolic diseases, Mucolipidosis, Parent groups

National MPS Society

Annotation: The National MPS Society, Inc., previously known as the National Mucopolysaccharidosis Society, serves parents of affected children through support, networking, physician referrals, professional and public education, and fundraising for research into mucopolysaccharidosis (MPS) disorders. Services to consumers include referrals, publications, and reference information. Publications include What Is MPS? , a newsletter, Courage, and booklets on MPS disorders. Some materials are available in Spanish.

Keywords: Mucopolysaccharidosis, Health education, Lipochondrodystrophy, Maroteaux-Lamy syndrome, Metabolic diseases, Mucolipidosis, Parent groups, Sanfilippo syndrome, Scheie syndrome, Support groups

   

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.