We empower and connect those touched by ectodermal dysplasias through education, support and research.

Check out our library for more information

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.

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We’re here to listen and provide support

Connecting with someone who knows exactly what you're going through can be a huge relief.

Our staff is here for you
and your family. Reach out to us, and we’ll talk to you one-on-one.
Find a supportive community
for you and your family through our Family Liaisons and private Facebook groups.
Get help with insurance
claims for your dental care for ectodermal dysplasias.

Advocating for the Ensuring Lasting Smiles Act

People in the United States who are affected by ectodermal dysplasias have endured decades of claim denials from their health benefit plans for medically necessary dental care. We are advocating for a law that would change that.

Learn More and Contact Your Legislators

The Search for Greater Understanding

We connect our families with researchers to compile information and deepen understanding. Our research has given the ectodermal dysplasias community a better understanding of the conditions and how to treat them.

Explore Our Research
Join Our Family Donate Volunteer

Stories of Hope

First Dentures for Hazel: Her Mom’s Perspective

First Dentures for Hazel: Her Mom’s Perspective

Watching your baby girl – who is only 5 – get fitted for her first pair of dentures can be an emotional journey. Read how Sarah Hamilton is navigating the process and find out what she’s learned about her daughter, herself and ectodermal dysplasia.

Read the Full Story
Born This Way

Born This Way

Suzanne Brown ignored her painful eyes for years, always thinking, “I’m fine.”  But she wasn’t fine.  In 2017, she noticed that she was going to bed earlier in the evening because “my eyes were done.” Affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome, Suzanne found a treatment that changed her life.

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Dating and Ectodermal Dysplasias

Dating and Ectodermal Dysplasias

David Cory talks about the good, the bad and the “What did she just say?!” of dating if you have ectodermal dysplasia. Read about his adventures in dating and what’s he learned about opening yourself to love.

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One More

One More

A teenager with ectodermal dysplasias talks about what drives him to go “one more.” Learn what he’s surprised to say about the disorder that affects him.

Read the Full Story

What's happening at NFED
We want to thank you.
October 30, 2018
Our Hero, Every Day
October 18, 2018

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