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
This email address is being protected from spambots. You need JavaScript enabled to view it.

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

This email address is being protected from spambots. You need JavaScript enabled to view it.

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.