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.
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.
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.
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 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.
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.
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.
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.