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!

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.

Learn More

Stories of Hope

This Is Not Some Hollywood Smile Issue
Mr. and Mrs. Weirdo and Goofball
Adopting My Daughter With Goltz Syndrome
Miss Wiggy

LET’S KEEP THE ADVOCACY MOMENTUM GOING

We now have 13 representatives who are co-sponsoring H.Res.464 and Senator Baldwin sponsoring S.Res.226. Both resolutions support ectodermal dysplasias. These additional legislators signed on because families reached out to them and shared their story. It’s not too late to make your voice heard about the need for a bill for health benefits for dental care of ectodermal dysplasias.

Learn More