We empower and connect those touched by ectodermal dysplasias through education, support and research.
Our library has all sorts of information on treating and living with ectodermal dysplasias, from cosmetics and keeping cool to the search for a cure.
Come take a look!
What are ectodermal dysplasias?
The ectodermal dysplasias are inherited disorders that involve defects in the hair, nails, sweat glands and teeth. When a person has at least two types of abnormal ectodermal features—for example, malformed teeth and extremely sparse hair—the individual is identified as being affected by ectodermal dysplasia.
Learn MoreWe’re here to listen and provide support
Connecting with someone who knows exactly what you're going through can be a huge relief.
Stories of Hope
Aubrey’s Story
Aubrey’s Story
Aubrey Stratz is your typical four-year-old girl who loves dancing, unicorns and dressing up as a princess. She’s happy and healthy. She adores her big brother, Max. What’s not typical about Miss Aubrey is the rare condition that affects her, hypohidrotic ectodermal dysplasia. What’s even more interesting is that her her dad was diagnosed, too, but has no symptoms.
Read the Full Story
Giraffes to Genes: Alexander’s Story
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.
Read the Full Story
A Grandmother’s Take on Ectodermal Dysplasia
A Grandmother’s Take on Ectodermal Dysplasia
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.
Read the Full Story
In Remembrance of Joseph J. Barone
In Remembrance of Joseph J. Barone
The National Foundation for Ectodermal Dysplasias (NFED) family recently lost a patriarch. Joseph J. Barone passed away peacefully on February 23, 2018, shortly after a fall. He had reached the age of 97 years, which is quite an accomplishment in itself. But for someone like Joe, it was even more impressive.
Read the Full Story
LET’S MARCH TO THE HILL TOGETHER!
It’s time to take action and raise our voices! We invite you and your family to Washington D.C. on Wednesday, July 18th for our NFED Advocacy Day on Capitol Hill. You will meet with your senators and representatives to share your story and advocate for insurance benefits for your dental and medical care.
Learn More and RegisterUpcoming Events
- Jun 23, 2018 14th Annual Rally for Ally
- Jul 6, 2018 2018 Family Conference
- Jul 18, 2018 Ectodermal Dysplasia Advocacy Day