We empower and connect those touched by ectodermal dysplasias through education, support and research.
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
Is It In Your Genes?
The EDELIFE clinical trial is studying a potential, prenatal treatment for boys affected by x-linked hypohidrotic ectodermal dysplasias (XLHED). Do you know if you have the genetic variation that causes XLHED? Is it possible you could pass the syndrome to your son? Learn more about the study and if you could qualify.
Upcoming Events
- Jul 14, 2023 2023 Family Conference
- Jul 29, 2023 Nikko for NFED 2023
- Sep 18, 2023 2023 Advocacy Day on Capitol Hill