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.

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

Families in the United States who are affected by ectodermal dysplasias have endured decades of denials from insurance companies for their medically necessary dental care. We are advocating for a law that would change that.

Learn More and Write Your Legislators

Support the 18th Annual Halloween Bash

We invite you to participate in our largest fundraiser of the year, the Halloween Bash. The Geismar family hosts this virtual event in October. You can make a gift, purchase an ad in the Journal or bid on auction items. Help us reach our goal to raise $150,000 for our efforts to help families and advance research.

Donate Now
Join Our Family Donate Volunteer

Stories of Hope

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.

Read the Full Story
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
I Am

I Am

A teenager affected by ectodermal dysplasia speaks from the heart in this poignant poem. Can you relate?

Read the Full Story
Aubrey’s Story

Aubrey’s Story

Aubrey Stratz is your typical four-year-old girl who loves dancing, unicorns and dressing up as a princess. She’s happy and healthy. She adores her big brother, Max. What’s not typical about Miss Aubrey is the rare condition that affects her, hypohidrotic ectodermal dysplasia. What’s even more interesting is that her her dad was diagnosed, too, but has no symptoms.

Read the Full Story

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

What's happening at NFED
Our Family’s Life-Changing Day
September 19, 2018
Children Don’t Need Teeth?
September 18, 2018

Upcoming Events