The NFED is funding research to help scientists develop a new way to diagnose XLHED prenatally. Because it’s non-invasive, it would not pose any risks for the pregnant mother. Learn about the procedure and how it would help mothers who are considering the EDELIFE clinical trial.
Find Out How Six Boys With XLHED Are Sweating Normally
Maarten and Linus were the first two boys treated before they were born with an investigational medicine for X-linked hypohidrotic ectodermal dysplasia. The boys are now 7 years old. The long-term results are incredibly positive! Read how they and the four other boys who were treated are doing.
Missing Proteins May Contribute to Skin Fragility in AEC Syndrome
What causes skin or corneal erosions in AEC or EEC syndrome? The NFED has been collaborating with Dr. Maranke Koster and her research lab to find that answer and ultimately develop new treatments. Read the latest update and what they are learning!
New Ectodermal Dysplasias International Registry Will Improve Research Efforts
The NFED is launching a new platform to connect our families with researchers worldwide. Find out how you can share your experience with ectodermal dysplasia by enrolling.
Why the EDELIFE Clinical Trial is Just for XLHED Boys
The EDELIFE Clinical Trial is investigating a potential treatment for boys affected by x-linked hypohidrotic ectodermal dysplasia (XLHED). Some of you have asked why the clinical trial is focused only on boys and not girls with XLHED. Find out why.
How Global Work Groups are Advancing Ectodermal Dysplasias Research
In 2021, we convened leaders in the medical and scientific community to envision and outline a research initiative for the next several years for the NFED. Read how scientists, care providers and patient advocates have been working together in four key areas, what they plan to achieve and what it means for the ectodermal dysplasias community.
XLHED Clinical Trial Opens in the U.S.
We have great news for XLHED families in the United States. The first site in the U.S. has opened at Washington University in St. Louis for
EDELIFE, the prenatal study for XLHED-affected boys. Learn about the treatment they are studying and how it can potentially impact XLHED symptoms, including the ability to sweat.
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!