Leading the World in Research for Ectodermal Dysplasias

The NFED is pioneering innovative research on several fronts to find answers to some of our many unanswered questions. Learn about efforts to establish prevalence rates, to develop treatment protocols for wound healing in the p63 syndromes, to establish best practices for eye treatment protocols for incontinentia pigmenti and more.

Why I Volunteer

Find out what happened to Jack Kriz when he was 50 years old that finally made him feel whole, and why he always says yes when the NFED asaks for his help.

Forty Years of Driving Ectodermal Dysplasias Research

As we celebrate our 40th anniversary and reflect on the journey to this point, we can say with certainty that no other entity in the world has driven ectodermal dysplasias research more than the National Foundation for Ectodermal Dysplasias (NFED). It’s been our honor to lead. Yet, the gratitude goes to the families who volunteered for studies, the curious researchers who strived to make a difference, and the donors who funded the vision. Let’s look at four decades of advancing research!

Launching a Major Research Campaign

We stand at an unprecedented time in history. Preliminary findings from research show great promise for eradicating two symptoms of the most common k ind of ectodermal dysplasia. It’s extraordinary! But without funding, this research study and others will not continue. We are launching the “Impact Cures, Now” campaign to raise $300,000 in the next three years for ectodermal dysplasias research.

A Cause Worth Fighting For!

Jeanne Wang wanted to give back to the organization that helped her when her son was diagnosed with a rare syndrome called EEC. She quickly found that education and raising awareness empowered her!