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
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.
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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.
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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.
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The Tear Is A Permanent Friend
The Tear Is A Permanent Friend
EEC syndrome is a shared experience for several people in Karsen Buck’s family. The teen talks about the challenges she faces and what has her concerned about the future.
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FAMILY CONFERENCE:
LET US BE YOUR BRIDGES TO INSPIRATION!
We invite you and your family to Portland, Ore. for our 37th Annual Family Conference on July 6-7. Learn about the latest treatments. Meet with our experts. Create your very own support network. We can’t wait to see you there! Be sure to register by May 25th. Rates increase after the deadline.
Learn More and RegisterUpcoming Events
- Jun 2, 2018 Sweat It Out 5K
- Jun 23, 2018 14th Annual Rally for Ally
- Jul 6, 2018 2018 Family Conference