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.
Charting a Course for Ectodermal Dysplasias Research
It’s an exciting time in research with science and genomics advancing at an incredible rate. To chart a course for research efforts for the next several years, the NFED will host an International Ectodermal Dysplasias Research Conference this fall.
Pregnant Mom Travels Around the World For Her Unborn Son
A mom’s dream to give her unborn son working sweat glands sent her on a journey around the world during a pandemic. Watch this video to hear her story and the treatment for x-linked hypohidrotic ectodermal dysplasia they received.
EspeRare Partners with Pierre Fabre to Develop Treatment for XLHED
After a challenging year, we are excited to share some good news – just in time for the holidays! The EspeRare Foundation announced a new partnership today that brings us closer to developing a potential treatment for x-linked hypohidrotic ectodermal dysplasia (XLHED). EspeRare and Pierre Fabre group have entered into an agreement to develop and…
Marching Toward a Cure!
Incontinentia pigmenti is a type of ectodermal dysplasia with challenging and complex symptoms. We need more research to understand it better, develop treatments and help parents like Shari Ezell, realize their dreams for their children.
What are your hopes and dreams?
What do you hope and dream for? Read what six families dream about and NFED’s research campaign to make those dreams come true.
Small Steps, Amazing Climbs
Even the tallest mountains can be scaled with enough small but purposeful steps Forever Forward. But not without decades of careful study, testing, steps forward, steps back, and the love and devotion of parents, families and you! Learn how you can help us with our campaign to advance research.