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 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.
for you and your family through our Family Liaisons and private Facebook groups.
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.
Stories of Hope
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