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Adults affected by ectodermal dysplasias

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

A boy wearing a teal shirt that says Ensuring Lasting Smiles Act and khaki shorts is holding a sign and has his left arm up in the air. The signs says, "I'm advocating for the Ensuring Lasting Smiles Act." The boy has sparse hair because he's affected by ectodermal dysplasia. Families affected by ectodermal dysplasias and other congenital anomalies often have trouble paying for medically necessary treatments that are not covered by insurance companies. 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.
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Girl affected by ectodermal dysplasia holding container with dentures.

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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Groundbreaking Treatment for XLHED in Development

EspeRare and Pierre Fabre are conducting a clinical trial to test the first potential treatment before birth for x-linked hypohidrotic ectodermal dysplasia (XLHED). The Edelife Clinical trial has sites in six different countries.

Early results showed that six boys who received the prenatal treatment sweat normally and have other improved symptoms. The trial is seeking up to 20 participants. Do you qualify?

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