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

Mr. and Mrs. Weirdo and Goofball
Adopting My Daughter With Goltz Syndrome
Miss Wiggy
How I Replaced the Lonely Feeling With Hope

ANNOUNCING A WEEK OF ACTION TO GET YOU DENTAL CARE COVERAGE

Next week, we will announce several opportunities in our Autumn is for Advocacy campaign for you to make your voice heard about the need for a bill for health benefits for dental care of ectodermal dysplasias.  Families, we need you to take action, to advocate.

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