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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Connecting with someone who knows exactly what you're going through can be a huge relief.
Stories of Hope
Miss Wiggy
Miss Wiggy
Hi, My name is Niamh and I’m 17, from West Yorkshire. I started wearing wigs when I was 16. I was born with a skin disorder called ectodermal dysplasia (Hay Wells syndrome) causing alopecia. I have two wigs currently. I cannot explain how amazing these wigs make…
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How I Replaced the Lonely Feeling With Hope
How I Replaced the Lonely Feeling With Hope
Briana Pinon felt incredibly alone when her baby was diagnosed with ectodermal dysplasia. That all changed when she connected with the National Foundation for Ectodermal Dysplasias. This mom talks about finding resources, connecting with other families and teaching her son about his condition.
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PROSE Lenses Give Super E the Ability to See
PROSE Lenses Give Super E the Ability to See
“Ethan has overcome everything that has happened. He has remained positive. – Natalie Kranig Ethan Kranig did not earn the nickname “Super E” for nothing. At nine years old, Ethan continues to prove time and again that he is a fighter in facing the many…
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What better time to raise money for the NFED?
What better time to raise money for the NFED?
By Brian Brubaker Overheating hasn’t been something that Kindergartner Emily Rose Brubaker has had to deal with very much so far growing up in Alaska. Normally in Alaska, hyp-O-thermia is much more common that hyp-ER-thermia. But in the middle of the Alaska winter, when…
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Impact Cures, Now!
We are at a pivotal moment in time where significant progress and breakthroughs are being made that can change the lives of people affected by ectodermal dysplasias for generations to come. Find out how you can get involved in our “Impact Cures, Now!” research campaign.
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Upcoming Events
- Sep 24, 2017 Don’t Sweat It Walk/Run
- Oct 17, 2017 Halloween Bash 2017 – Save the Date
- Oct 21, 2017 Jayden’s Halloween Hustle