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.

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Stories of Hope

Babies With XLHED Treated In Utero
The Power of Sharing Our Journey with EEC Syndrome
A Parent’s Persistence Pays Off
My Disorder Didn’t Affect My Dreams

Register Now For Family Conference and Advocacy Day

Spring may be here but we are getting excited for summer! You will want to join in on the fun. Join your ectodermal dysplasias community in Falls Church, Virginia, July 19-22 for the 36th  Annual Family Conference. This year, we are also going to Capitol Hill to tell legislators about our experiences with ectodermal dysplasias and advocate for change. We are expecting a big turnout. Don’t delay. Register today!

Learn More and Register to Participate