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Children's Craniofacial Association
This association can help identify educational, medical, and financial resources for families affected by craniofacial syndromes, in addition to providing support groups for families.
The National Craniofacial Association: Saethre-Chotzen Syndrome
This website has general information on SCS and has a list of additional weblinks that may help families.
This group provides general information and support for families, and may help identify useful resources.
Headlines, Craniofacial Support
This website provides information on craniofacial syndromes and can provide booketls on SCS specifically. They also provide a support network for families, weblinks, and general resources.
Alliance of Genetic Support Groups
Information on SCS can be requested. This site also has many support groups and informational resources for families affected by genetic disorders in general. They are also an advocacy group.
MUMS: National Parent to Parent Organization
This organization can help find and connect you to other families who also have children with Saethre-Chotzen Syndrome. Children with Facial Difference: A Parent's Guide. Written by Hope Charkins, MSW. Published by Woodbine House, 1996.