National Health Council — Voluntary Health Agency Guide

National Foundation for Ectodermal Dysplasias

The National Foundation for Ectodermal Dysplasias (NFED) seeks to enrich the lives of individuals affected by all forms of the ectodermal dysplasia syndromes. The NFED's mission is to be the authoritative resource for information on the ectodermal dysplasia syndromes; provide services that meet the physical, emotional, informational and social needs of affected individuals and their families, and that help them lead a more normal life; and support research on the ectodermal dysplasia syndromes.

About the condition(s):

The ectodermal dysplasia (ED) syndromes are a group of more than 150 rare, genetic conditions. ED is characterized by two or more ectodermal structures (hair, teeth, glands and nails) developing and functioning abnormally. Typical symptoms can include multilple missing and misshapen teeth, sparse hair and the inability to perspire. Other symptoms can include missing digits, hearing loss, severe skin erosion, cleft lip/palate, respiratory issues, dry eye and more.