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…
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…
The Pagano family is hosting this 5K Run/Walk in Media, Pennsylvania in honor of Jayden Clark, who is affected by AEC syndrome.
Jodi Edgar Reinhardt has dedicated 25+ years to the ectodermal dysplasias community as a staffer at the National Foundation for Ectodermal Dysplasias.
Jack Geismar is hosting a 3-on-3 basketball tournament at Syracuse University in honor of his brother, Ryan Geismar.
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.
The Ensuring Lasting Smiles Act (ELSA) was introduced as a bill in the U.S Senate and House today. This legislation will significantly impact families affected by ectodermal dysplasias and other congenital anomalies. If passed, it will provide health benefits for their complex dental care.
People with certain types of ectodermal dysplasia are not able to sweat normally. Because of this inability to sweat, people with this symptom need to be especially careful in warm or hot environments. Not all people who are affected by ectodermal dysplasias will experience this symptom. Along those lines, an inability to sweat can occur…