Understanding the WNT10A Gene

In recent years, we have learned that one gene is now the cause for three different types of ectodermal dysplasia. Learn more about the gene called WNT10A and how it manifests.

Help Us Crush Our 2019 Goals

You can help us crush our 2019 goals. Do you want to be a monster or a mummy? Want to bid on some great prizes? Or, could you make a few clicks to advocate for our important bill? We are looking for volunteers to help with all of these to improve lives for the ectodermal dysplasias community.

Research Impact

Like many rare disease organizations, the National Foundation for Ectodermal Dysplasias (NFED) stepped up to serve as a catalyst for research that is otherwise likely to be neglected by mainstream science. Now, with more than 40 years of leadership, the NFED is driving the charge to develop effective treatments and—most importantly—cures. Funding Discovery Research has…

Research Studies

Since the 1980s, the National Foundation for Ectodermal Dysplasias has provided more than $1.3 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. Learn more about the research that’s helping us classify, diagnose and treat ectodermal dysplasias—and…

Jayden’s Halloween Hustle 2019

The Pagano family is hosting this 5K Run/Walk in Media, Pennsylvania in honor of Jayden Clark, who is affected by AEC syndrome.

Our Baby Rocker and King of Spreadsheets

From rocking babies at the Family Conference to serving as interim executive director, Anil Vora has done it all for the National Foundation for Ectodermal Dysplasias in the last 30 years. We thank him for his unparalleled commitment and Board leadership.