Prevalence Rates: How Many People are Affected by Ectodermal Dysplasias?

People often ask, “How many individuals are affected by ectodermal dysplasias?” It’s a challenging question to answer, since they are rare conditions. A team of NFED researchers now has an answer. Read to learn just how prevalent ectodermal dysplasias are and why these numbers are important.

Experiencing the Magic of Ectodermal Dysplasias Research Collaboration

Bringing people together is what the National Foundation for Ectodermal Dysplasias does best—especially when advancing research. This is more than science; it’s about saving lives. Read what happened at our recent Complex Wound Healing Conference in Philadelphia.

No Fingerprints Can Be An Ectodermal Dysplasia Thing

Do you have a hard time gripping a pen? Can swiping on your phone be frustrating? Is getting fingerprinted impossible? You are not alone. Yes, it’s an ectodermal dysplasia thing. Learn more about adermatoglyphia, its challenges and what you can do to overcome them.

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.

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!

2019 Annual Impact Report

Since 1981, our mission has focused on families affected by ectodermal dysplasias. We are proud of the extraordinary accomplishments we have achieved in our nearly four decades. 2019 was no exception. Read to see the impact we made for our NFED family.

A Grandma’s Greatest Passion

At the NFED, we hold a special place in our hearts for our volunteers. Donna Garrett-Miller is a proud volunteer who has left her mark on the ectodermal dysplasias community after just one year since her grandson was diagnosed with AEC syndrome.