Three young men affected by EEC syndrome show their hands which are missing fingers.

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!

A mom and dad stand with their young son who is affected by 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
A Wild Yet Silent Thunderstorm
Jeronimo, Our Teacher
Clouston Syndrome: Perfectly Different

Meet Your Ectodermal Dysplasias Community at the Family Conference

You have a few weeks lefts to register for the Family Conference! It will be three jam-packed days you won’t want to miss. Find answers to your questions. Meet one-on-one with medical and dental experts. Sign up to volunteer for one of the three ectodermal dysplasia research opportunities. Connect with other families. It’s going to be a great experience. Don’t miss it!

Learn More and Register