Three young men affected by EEC syndrome show their hands which are missing fingers.

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!

A mom and dad stand with their young son who is affected by hypohidrotic ectodermal dysplasia

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 More

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
Marching On After Diagnosis

Marching On After Diagnosis

Jonathan Weil tells the story of how his family grew in strength and knowledge after his daughter, Maddie’s, diagnosis with ecodermal dysplasias. They’ve come a long way from feeling helpless.

Read the Full Story
A Wild Yet Silent Thunderstorm

A Wild Yet Silent Thunderstorm

Heather Martin struggled to find answers after her son Isaiah did not fully develop teeth from birth. She was told by multiple dentists that his teeth should be capped, but she did not listen. Follow Heather’s journey as she fianlly finds the answers she was looking for in a diagnosis.

Read the Full Story
Jeronimo, Our Teacher

Jeronimo, Our Teacher

Jorgelina, a mother in Argentina, was shocked and sad when one of her twin sons was diagnosed with ectodermal dysplasia. As an English teacher, she decided to learn everything she could. But, it was her son, Jeronimo, who became her best teacher and changed her attitude.

Read the Full Story

What's happening at NFED
Fighting for Teeth
August 8, 2019
What Happened at the 2019 Family Conference
August 8, 2019

Upcoming Events