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.
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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.
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Stories of Hope
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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Diagnosed Over the Phone With Ectodermal Dysplasia
Diagnosed Over the Phone With Ectodermal Dysplasia
When Mason Langefeld still had not developed any teeth by his one-year-old check-up, his mom, Renee, decided to call a local dentist. He asked her a few questions that finally pointed them toward answers and a resource to help them care for their son. Read how they successfully fought their insurance company to pay for their son’s dentures.
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JOIN US ON CAPITOL HILL TO ADVOCATE FOR INSURANCE BENEFITS FOR TEETH
We invite you to our 2nd Ectodermal Dysplasias Advocacy Day on Capitol Hill on Wednesday, July 18. Help us advocate for a federal law that will mandate insurance benefits to help you get your dental care.
Learn More and RegisterUpcoming Events
- May 12, 2018 Dancing for Smiles
- May 19, 2018 Keene’s Crawfish Boil
- Jun 2, 2018 Sweat It Out 5K