NFED members affected by Ectrodactyly-Ectodermal Dysplasia-Clefting (EEC) 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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Join Us for the 2022 HALLOWEEN BASH!

We invite you to join us, virtually, for our most exciting fundraising event of the year, the Annual Halloween Bash! Each October, the Geismar family proudly hosts this FUN event to benefit the NFED.

There are many ways to help us reach our fundraising goal of $125,000 to support our mission, help families, and advance research, treatment and cures. You can make a gift, purchase an ad in the Journal, or bid on unique and fun action items.

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