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!Donate to Boost the Cure
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 in clinical trial and currently seeking volunteers to participate. 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.
- Ankyloblepharon-Ectodermal Dysplasias-Clefting Syndrome (AEC) Studies
- Ectrodactyly-Ectodermal Dysplasia-Clefting Syndrome (EEC) Studies
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
Participate in a Study
The NFED grants access to patients to researchers investigating a topic related to ectodermal dysplasias.