Jacob Moss is looking for individuals with ectodermal dysplasia, ages 15-50, to participate in his photo project for his graduate thesis. His goal is to capture the diverse mix of people who happen to be affected by the various types of ectodermal dysplasia.
Advice on Treatment with Dental Implants in Hypohidrotic Ectodermal Dysplasia
Researchers have learned that the bone found in the jaws of individuals affected by hypohidrotic ectodermal dysplasia is extremely hard and can cause complications for dental surgery. Learn what your dentist should know if you are considering dental implants.
Welcoming New Volunteers to our Board and Council
We are happy to announce that Roy Moffitt has joined the NFED Board of Directors and Dr. Beau Meyer, a dental researcher, has joined the Scientific Advisory Council.
You Have the Chance to Change History
Every day, the NFED staff receives calls, emails and social media messages about the terrible struggles families have getting coverage for their dental care. Insurance coverage issues have plagued our community for decades. Raise your voice with us to take action. We need just one more Representative to cosponsor and introduce a Bill. We have four different opportunities for you to advocate.
Hypohidrosis and How to Chill Out in the Car
Does hypohidrosis make you want to stay inside? Learn what to do to keep loved ones who can’t sweat cool this summer while they are riding in the back seat of a car.
Giraffes to Genes: Alexander’s Story
Alex’s story started out just like any other story. The perfect little baby who fed well, was always normal on the growth charts and in general was a happy baby! We were also happy that he had the perfect little shaped head to be bald. You see, we did not know at the time that his extended baldness had anything to do with a rare genetic disorder, so we always joked it was a good thing his little baby head was shaped so perfectly.
Incontinentia Pigmenti Researchers to Study Heart Problems
Researchers are studying whether certain heart problems might be associated with the rare genetic condition known as incontinentia pigmenti (IP). Researchers are seeking affected individuals to participate in their study.
I’ve Often Felt Odd
Aubrey Vora has spent her lifetime attending NFED Family Conferences. In her family’s journey with ectodermal dysplasia, she learns about the many ways to be human, being a member of the tribe and how you can impact someone’s life simply by showing up.