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!
The Baby With XLHED Who Now Sweats
Laura Reiser grew up watching her dad struggle with the heat since he couldn’t sweat due to x-linked hypohidrotic ectodermal dysplasia (XLHED). When she became pregnant with a boy who also had XLHED, she and her husband, Milo, decided to participate in research that would potentially restore their unborn son’s sweat glands. Learn how another NFED mom helped them decide to do it, how baby Bennett is doing and how it’s impacted his “Papa.”
World Experts Collaborate to Advance Ectodermal Dysplasias Research
For four days in October, 80 experts from around the world came together to chart a course for the future of ectodermal dysplasias and rare disease research. The ultimate goal was: “Translating Discovery to Therapy”. Find out how the International Ectodermal Dysplasias Research Conference will impact diagnosis and therapy development.
XLHED Clinical Trial of a Prenatal Treatment Begins
The EspeRare Foundation and Pierre Fabre Group announced that EDELIFE, the clinical study of a treatment for XLHED, has begun! Learn more about the ER-004 treatment and if you are eligible to participate in the trial.
A History of Ectodermal Dysplasias Research Discovery
The National Foundation for Ectodermal Dysplasias (NFED) is making some noise in the world of ectodermal dysplasias! We are shaping the future, with new research studies and breakthrough treatments that are already changing lives. You are such an important partner as we follow this path of breakthrough treatments and potential cures.
XLHED Clinical Trial One Step Closer to Launching
Today, we received fantastic news for x-linked hypohidrotic ectodermal dysplasia! EspeRare and Pierre Fabre announced that the ER-004 clinical trial is posted on ClinicalTrials.gov. Find out what that means and how it impacts our XLHED families.
The Power of a Mother’s Love
The Nelson family was committed to getting their unborn son a potentially life-changing treatment for his XLHED. But, that meant traveling across the world-twice-in the middle of a pandemic! Learn more about their incredible adventure and how their son is doing.
Volunteers Needed for Dermatology Research Survey
Dermatologist Dr. Amy Paller is researching transition readiness in adolescents with genetic chronic skin disorders, such as ectodermal dysplasia. Learn more about how you or your adolescent can participate.