Together, we enrich the lives of people affected by ectodermal dysplasias, creating a brighter future for all those impacted.
Your support makes journeys like Ally’s possible. Because of you, children and families affected by ectodermal dysplasias find hope, resources, and a sense of belonging.
This spring, help us continue planting seeds of hope and growth.
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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
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
- May 12, 2025 10th Annual Sweat It Out 5K
- Jul 10, 2025 2025 NFED Family Conference
- Sep 20, 2025 Nikko for NFED Raffle and BBQ