Holoprosencephaly Organizations

 

 

 

Carter Centers for Brain Research in Holoprosencephaly and Related Malformations

 

Texas Scottish Rite Hospital for Children
Department of Neurology
2222 Welborn Street
Dallas, TX 75219-3993
214-559-8411,  800-421-1121
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http://www.carterdatabase.org/hpe/

 

Website for a group of research centers dedicated to studying holoprosencephaly and creating an international registry of patients. Site includes latest research developments, a helpful list of support and resource links for parents, and information in Spanish.

 

The Holoprosencephaly Support Site

 

http://hpe.home.att.net/

 

Parent support group site, including email groups and conference information.

 

 

Madisons Foundation


PO Box 241956
Los Angeles, CA 90024
310-264-0826

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http://www.madisonsfoundation.org

 

The Madison's Foundation website connects parents of children with various diagnoses, including many rare ones. Get information and join online conversations for your diagnosis.