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National Foundation for Ectodermal Dysplasia
This is a great and helpful website for parents who want more information. There is a newsletter, list of frequently asked questions, link for current research, and support groups. NFED also has a database of dentists and doctors recommended by families who are affected by ED.
Ectodermal Dysplasia Society
This organization is based in the United Kingdom. It provides great support and offers a lot of information about ED. They also have a newsletter and links to the latest news on this topic. There are many articles that parents of ED children have submitted, which give insight into their personal and family lives.
UCSF Center for Craniofacial Anomalies
A nice, concise summary of the disease with links to support groups.