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.
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
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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Cody’s Limitless Life
Cody’s Limitless Life
What have you let set you back today? This is a question that Cody Snell can answer with a smile. He has he never let anything including his x-linked hypohidrotic ectodermal dysplasia (XLHED) keep him from anything. That includes playing sports year round while growing…
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Doing Everything I Can for Ectodermal Dysplasias
Doing Everything I Can for Ectodermal Dysplasias
By Debbie Fenoglio I was pregnant with my second son, Benjamin, in the late summer of 2011 when it was first suggested that my oldest son, Jackson, had ectodermal dysplasia. Like many before me, I had not heard of ectodermal dysplasia. It was offered by…
Read the Full StoryCounting Down to Family Conference and First Advocacy Day
We can’t wait till July when we will welcome more than 450 people to our Family Conference in Falls Church. This will be the largest gathering in history of our ectodermal dysplasias community. More than 170 of our voices will be heard on Capitol Hill for the first Ectodermal Dysplasias Advocacy Day on July 19. We have all of details you need to know to make your trip one to remember!
Learn MoreUpcoming Events
- Sep 9, 2017 Bruno’s NFED Golf Outing
- Sep 24, 2017 Don’t Sweat It Walk/Run
- Oct 21, 2017 Jayden’s Halloween Hustle