The National Foundation for Ectodermal Dysplasias (NFED) has been the driving force behind ectodermal dysplasias research for more than 30 years. Very little was known about the ectodermal dysplasias when we formed in 1981. We knew from the beginning that only research was going to hold the answers to our families’ questions and provide hope for possible cures. We also knew that it was up to the NFED and our families to lead the effort to make it a reality.

Ectodermal Dysplasias International Registry

The Ectodermal Dysplasias International Registry is an online database that collects and stores the personal information and symptoms experienced by affected individuals. The Registry helps us better describe the different ectodermal dysplasias which can lead to improved diagnosis. And, when a clinical trial becomes available, the Registry is a crucial way to alert eligible families of the opportunity to participate. Together, we can advance research!

Join the Registry
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Research Impact

We have made enormous strides in the understanding and treatment of the ectodermal dysplasias. The NFED’s research impact spans decades, millions of dollars in funding, and our community of families around the world. Read about our success and those who’ve made it possible.

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Research Studies

The NFED’s strategy has been to identify researchers, provide them with access to our families and offer seed grants to get the projects off the ground. Explore past and present research studies that help us classify, diagnose and treat ectodermal dysplasias—potentially leading to cures.

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Clinical Trials

Developing treatments and cures for ectodermal dysplasias requires hands-on clinical research. Clinical trials are the way that drugs, devices or other treatments are tested in humans to see if they are safe and effective. Learn about previous trials and recruitment for future ones.

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Particpate in a Study

Adults and children who participate in medical research are leading the way when it comes to understanding different conditions, genes, and therapies. See active studies that have been approved by our Scientific Advisory Council and decide if you’d like to get involved.

Impact Cures, Now!


Types of ectodermal dysplasias


NFED’s research investment to date


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