The worldwide expert on ectodermal dysplasias and the only advocacy organization in the U.S. dedicated to those living with these disorders.
Research for ectodermal dysplasias is urgent now more than ever! With more than 50 known types, there is still so much we don’t understand. Individuals and families are waiting for answers.
You can be the one who lights the way for the next life-changing discovery. Illuminate ectodermal dysplasias research with your gift today.
Donate Today
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.
Learn MoreWe're Here to Listen and Provide Support
Browse Our Resource Library
Find a Supportive Community
Get Help From NFED Staff
The Impact of Research
$3.6M
Invested in Research
118
Research Studies and Trials
1,000+
Participants from NFED Families
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?
Upcoming Events
- Oct 17, 2025 25th Annual Halloween Bash 2025
- Nov 3, 2025 Advocacy Day on Capitol Hill 2025