We empower and connect those touched by ectodermal dysplasias through education, support and research.

Father and child supporting ELSA together Families affected by ectodermal dysplasias often have trouble paying for necessary dental work that's not covered by insurance companies. Teeth are not cosmetic! We need your help to close a loophole in the law that allows insurance companies to deny necessary medical and dental procedures to those affected by congenital anomalies like ectodermal dysplasias. Our advocacy tool makes it easy to reach out to your legislators and affect change. Because of our passionate advocates, we now have more than 290 co-sponsors in the House of Representatives!
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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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The Impact of Research

$3.6M

Invested in Research

118

Research Studies and Trials

1,000+

Participants from NFED Families

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COVID-19 and Ectodermal Dysplasia

We strive to provide you with updated information about COVID-19 and how its risks for someone who has ectodermal dysplasia. Find out what you need to now to stay safe and informed.

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