NFED Research Studies

Since the 1980s, the National Foundation for Ectodermal Dysplasias has provided more than $3 million in funding for research studies. Our research impact wouldn’t be possible without dedicated scientists and partners as well as families and individuals who volunteer to participate.

Shape Our Futures With Research

Ectodermal dysplasia can cause a lifetime of challenges. By supporting research, you expand early diagnostics, treatments, pathways toward cures… and hope!

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Past & Current Research Studies

Learn more about the research that’s helping us classify, diagnose and treat ectodermal dysplasias—and putting us on a path to finding cures.

Ectodermal Dysplasia Classification Studies

Since 2008, researchers around the world have been working to define ectodermal dysplasia and create a classification system. Their findings are now ready!

Learn About Classification Research

X-Linked Hypohidrotic Ectodermal Dysplasia Studies

After preliminary studies, a potential in utero XLHED treatment is going to clinical trial. Get up to speed on the latest developments and past work.

Learn About XLHED Research

P63 Syndrome Studies

Syndromes like AEC, EEC, ADULT, and limb-mammary are caused by mutations in the p63 gene. Current research is focused on the treatment of related skin erosion and corneal abrasions.

Goltz Syndrome Studies

Previous research efforts focused on Goltz syndrome, also known as focal dermal hypoplasia, have helped us better understand diagnosis and causes of short stature.

Learn About Goltz Syndrome Research

Type Unknown Studies

In partnership with Baylor College of Medicine, the NFED is working with families without a specific diagnosis to learn more about the genetic roots of ectodermal dysplasias.

Learn About Type Unknown Research

Other Active Studies


The NFED grants access to patients to researchers investigating a topic related to ectodermal dysplasias.

Participate in a Study