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

I Am
Aubrey’s Story
Giraffes to Genes: Alexander’s Story
A Grandmother’s Take on Ectodermal Dysplasia

Advocate With Us – On the Hill or at Home – on July 18th

It’s time to take action and raise our voices on Ectodermal Dysplasias Advocacy Day, Wednesday, July 18th. More than 100 people are joining us on Capitol Hill. If you can’t make the trip, you can still help get insurance benefits for dental care and medical care due to ectodermal dysplasia. Contact your members of Congress on the 18th and ask them to support the Ensuring Lasting Smiles Act (ELSA).

Learn More