NFED Loves Our Volunteers

We empower and connect those touched by ectodermal dysplasias through education, support and research.

Our library has all sorts of information on treating and living with ectodermal dysplasias, from cosmetics and keeping cool to the search for a cure.
Come take a look!

Jaime Keene and her son, Grant, who is affected by x-linked hypohidrotic ectodermal dysplasia.

What are ectodermal dysplasias?

The ectodermal dysplasias are inherited disorders that involve defects in the hair, nails, sweat glands and teeth.  When a person has at least two types of abnormal ectodermal features—for example, malformed teeth and extremely sparse hair—the individual is identified as being affected by ectodermal dysplasia.

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Stories of Hope

First Dentures for Hazel: Her Mom’s Perspective
Clouston Syndrome: Perfectly Different
The Road Less Traveled
Our Baby Struggled to Swallow

Registration is Now Open for the Family Conference!

Resolve to make 2019 the year you attend the Family Conference. Find answers to your questions. Meet one-on-one with medical and dental experts. Learn about the latest research for XLHED and the pending clinical trial. Connect with other families.

Learn More and Register