National Foundation for Ectodermal Dysplasias (NFED)

The National Foundation for Ectodermal Dysplasias (NFED), which was established in 1981, is a non-profit service organization committed to being the authoritative resource for information on the ectodermal dysplasia (ED) syndromes; providing services that meet the physical, emotional, informational, and social needs of affected individuals and their families; and supporting research on the ED syndromes. The ED syndromes are a group of rare inherited disorders that typically affect the hair, teeth, nails, and/or skin. The foundation provides informational materials and support for families affected by ED syndromes in the United States and around the world. It also provides medical and dental professionals with useful information on early diagnosis and treatment options. The NFED maintains a database of healthcare professionals who have experience in treating people with ED.