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

Babies With XLHED Treated In Utero
Fundraising? You Can Do this!
Evan’s Story
We Were So Scared

Register Now: Family Conference

The Family Conference is for everyone affected by ectodermal dysplasias and their loved ones. Our caring staff and families will welcome you with open arms and understanding. You will quickly experience – not just know – that you are not alone.  This year, you have the added opportunity to advocate on Capitol Hill and participate in research at the National Institutes of Health.

Learn More