John Dickie IV was a young adult when he attended his first NFED Family Conference in 1987. His eyes were opened when he saw older guys affected by ectodermal dysplasia who had families and careers. Their lasting impression made him and his family want to give back to the NFED family, too. Read about the Dickies’ ectodermal dysplasia journey, their love for the NFED, John’s adventures and the advice he has for parents.
Let’s Celebrate 40 Years of NFED Success!
The National Foundation for Ectodermal Dysplasias (NFED) turned 40 years old on December 24, 2021. Normally, we would have recognized this milestone throughout last year. But, the pandemic caused us to shift our plans. Find out what we all have planned for this celebration year!
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.
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.
HOPE is our Driving Force
In this year filled with so much uncertainty, HOPE provides us with the energy and determination to keep moving forward. Here’s what gives us hope!
2019 Annual Impact Report
Since 1981, our mission has focused on families affected by ectodermal dysplasias. We are proud of the extraordinary accomplishments we have achieved in our nearly four decades. 2019 was no exception. Read to see the impact we made for our NFED family.
We Celebrate Ectodermal Dysplasias globally!
The National Foundation for Ectodermal Dysplasias (NFED) has been celebrating Ectodermal Dysplasias Awareness Month throughout February and Rising Up for Rare! But today, 2-20-2020, we join with the ectodermal dysplasias support groups in other countries to celebrate the first International Ectodermal Dysplasias Awareness Day. We are very proud of our international partners and collaborations! Let…
Free Ectodermal Dysplasia Webinars
We are excited to announce our webinar series for 2020: Conference from your Couch! Join us on the second Wednesday of every other month in 2020 at 7 p.m. central for FREE webinars to learn more about ectodermal dysplasias, symptoms, treatments and research.