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