Together, we enrich the lives of people affected by ectodermal dysplasias, creating a brighter future for all those impacted.
The Ectodermal Dysplasias Registry is a powerful opportunity for individuals with ectodermal dysplasias and their family members to contribute directly to research that will enhance our understanding of the conditions. Every individual’s story and experience are a unique, invaluable part of a disease’s natural history. Join now, and let your data tell your story!
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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
$4.8M
Invested in Research
118
Research Studies and Trials
1,000+
Participants from NFED Families
Groundbreaking Treatment for XLHED in Development
A groundbreaking clinical trial is testing the first potential treatment before birth for x-linked hypohidrotic ectodermal dysplasia (XLHED). The Edelife Clinical Trial has sites in six different countries, including two in the U.S.
Early results from a previous study showed that six boys who received the prenatal treatment sweat normally and have other improved symptoms. The Edelife trial is seeking more participants. Do you qualify?
Upcoming Events
- Aug 20, 2026 Webinar: ELSA Summer Call-to-Action Week
- Sep 15, 2026 Webinar: AI and the Ectodermal Dysplasias Patient Experience
- Sep 24, 2026 Wound Healing Conference