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).

About Face

Annotation: AboutFace is an international organization providing information services, educational programs, and emotional networking support to individuals with facial disfigurements and their families. Membership includes children, adults, and families affected by facial differences, health care and social service providers, dental professionals, and educators. Publications include a bimonthly newsletter, brochures and booklets on medical conditions, treatment issues/plans and socialization issues etc., and a series of educational programs for elementary schools.

Keywords: Apert syndrome, Cleft lip, Cleft palate, Congenital port wine stain, Craniofacial abnormalities, Crouzon syndrome, Goldenhar syndrome, Naevus flammeus

Sturge-Weber Foundation (SWF)

Annotation: The Sturge-Weber Foundation (SWF) serves as a clearinghouse for information on Sturge-Weber syndrome,Klippel-Trenaunay syndrome and port wine stain related conditions. The SWF facilitates and funds research on the syndromes, and maintains a support network for affected persons and families. SWF is also working to increase government's investment in research for a cure. Publications include medical papers, a 3x a year newsletter, and monthly E-news. Some materials are available in Spanish. SWF also sponsors local and national conferences.

Keywords: Congenital port wine stain, Nervous system diseases, Parent groups