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

Aubrey’s Story
Giraffes to Genes: Alexander’s Story
A Grandmother’s Take on Ectodermal Dysplasia
In Remembrance of Joseph J. Barone


It’s time to take action and raise our voices! We invite you and your family to Washington D.C. on Wednesday, July 18th for our NFED Advocacy Day on Capitol Hill. You will meet with your senators and representatives to share your story and advocate for insurance benefits for your dental and medical care.

Learn More and Register