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
A Legacy of HED: Finding Answers for the Reeder Family
A Legacy of HED: Finding Answers for the Reeder Family
Ectodermal dysplasia runs in Kylie Reeder’s family. After she married, her in-laws learned that the daughter they are adopting may also share the condition.
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The Power of Sharing Our Journey with EEC Syndrome
The Power of Sharing Our Journey with EEC Syndrome
An NFED dad and self-described introvert finds the strength in being vulnerable and the power that comes from sharing your story. He and his family share how they are facing his son’s challenges with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome and using it as an opportunity to raise awareness and funds.
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A Parent’s Persistence Pays Off
A Parent’s Persistence Pays Off
Armenian eleven-year-old artist, Nika, has already had 4 sets of dentures thanks to her parent’s persistence and her dentist’s participation and willingness to go on the dental journey.
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My Disorder Didn’t Affect My Dreams
My Disorder Didn’t Affect My Dreams
Tova was diagnosed around age three with ectodermal dysplasia. Since then she has overcome bullies, dentists who should not have treated her, awarded the title of Miss Teen Dance of Chicago in high school, earned three graduate degrees, including a Ph.D. in human genetics and an M.D. Learn what having ectodermal dysplasia has taught her.
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
- Jul 12, 2017 Jack’s Bike Ride to Family Conference
- Jul 14, 2017 Lavender Cooling Mist Fundraiser
- Jul 19, 2017 Advocacy Day on Capitol Hill