NFED members affected by ankyloblepharon-ectodermal-defects-cleft lip and/or palate (AEC) syndrome

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.
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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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Will You Support Our 40th Anniversary?

Just 40 years ago, individuals and families affected by ectodermal dysplasias didn’t have a trusted place to turn when they received this rare diagnosis. Today, the NFED is the global expert and provider of research, education, advocacy and support for ALL affected by ectodermal dysplasias. Will you help us increase our impact in the next 40 years and beyond?

Support Our 40th Anniversary