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

Giraffes to Genes: Alexander’s Story
A Grandmother’s Take on Ectodermal Dysplasia
In Remembrance of Joseph J. Barone
The Tear Is A Permanent Friend



We invite you and your family to Portland, Ore. for our 37th Annual Family Conference on July 6-7. Learn about the latest treatments. Meet with our experts. Create your very own support network. We can’t wait to see you there! Be sure to register by May 25th. Rates increase after the deadline.

Learn More and Register