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.

Sweat on a baby's nose

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.

Edelife Clinical Trial

The first treatment for x-linked hypohidrotic ectodermal dysplasia (XLHED) is being studied at 8 centers around the globe. Findings from six boys with XLHED who received the treatment in-utero developed working sweat glands and other improved symptoms. The study is enrolling 15-20 patients. Find out if you are eligible to participate.

Mom and child with nurse

Prior 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.

Family signing research consent forms

Participate in Research

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.

Resources for Researchers

The National Foundation for Ectodermal Dysplasias has been the leading catalyst for ectodermal dysplasias research for the last three decades. We host international research conferences, help coordinate on-going clinical trials, and support academic and industry researchers with a goal to better understand ectodermal dysplasias and develop new treatments.

International Ectodermal Dysplasias Research Conference logo

Scientific Conference

We brought together researchers and scientists from around the world to identify new opportunities to improve diagnosis and identify better treatments. The conference focused on issues related to hair, skin, eye and craniofacial/dental phenotypes. Learn more and register.

Shaping Our Future


Types of ectodermal dysplasias


NFED’s research investment to date


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