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.
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.
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.
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.
Skin erosion can be life-threatening for people affected by ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome. Two research labs are studying to understand the molecular defects that lead to skin erosions so they can ultimately develop therapies.
Dr. Schneider and his team of investigators have published their groundbreaking research results in a “Prenatal Correction of X-Linked Hypohidrotic Ectodermal Dysplasia.” We are thrilled to share with you key highlights from their research, what it means for our families affected by XLHED, and the next steps.
April is Volunteer Appreciation Month. A time to recognize, thank and celebrate volunteers. We respect and love our Volunteers yearlong but this is your special month to cheer you on for all you have done and do for those affected by ectodermal dysplasias and the NFED. We celebrate your service. It has become even clearer…
As a baby, Weston Walker experienced all of the same issues his mom, Randi, had when she was born. He struggled to breathe. He choked and spit up a lot. He didn’t cut teeth. For Debbie Reed, Randi’s mom and Weston’s grandma, it was heartbreaking to live it all over again. They visited doctor after doctor, asking if this was normal. Read how a diagnosis changed how this grandma looks at life.