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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).

4p– Support Group

Annotation: 4p– (or Wolf Hirschhorn Syndrome) Support Group was founded in 1985 to help families affected by chromosome 4p deletion. Information is sent only to parents of affected children. Publications include a newsletter. The group sponsors biannual conferences and biannual regional gatherings.

Keywords: Chromosomal deletion, Chromosome 4, Parent groups

Chromosome Deletion Outreach (CDO)

Annotation: Chromosome Deletion Outreach, Inc. is a non-profit organization that provides support and information to families affected by rare chromosome disorders. These disorders include deletions, duplications, translocations, rings and inversions. CDO provides family matching, a quarterly newsletter, listservs and articles on rare disorders if available. Some materials are available in Spanish and French.

Keywords: Chromosomal deletion, Chromosome abnormalities, Listservs, Parent groups

Parents and Researchers Interested in Smith-Magenis Syndrome (PRISMS)

Annotation: Parents and Researchers Interested in Smith-Magenis Syndrome (PRISMS) is dedicated to providing information and support to families of persons with Smith-Magenis Syndrome (SMS) and fostering partnerships with professionals to increase awareness and understanding of SMS. Available publications include a fact sheet, a brochure, and a periodic newsletter. A Parent to Parent program for networking and support is available; and PRISMS maintains registry of cases and a medication database.

Keywords: Chromosomal deletion, Interstitial deletion, Parent groups, Smith-Magenis 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.