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.
Insurance Help for Ectodermal Dysplasias
Dealing with insurance companies that don't understand ectodermal dysplasias can get frustrating and expensive, but that doesn't mean you shouldn't submit and appeal your claims. Our toolkit and advisors can help you through the process. We've seen plenty of families succeed!
Learn More and Download the Toolkit
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
Alex’s story started out just like any other story. The perfect little baby who fed well, was always normal on the growth charts and in general was a happy baby! We were also happy that he had the perfect little shaped head to be bald. You see, we did not know at the time that his extended baldness had anything to do with a rare genetic disorder, so we always joked it was a good thing his little baby head was shaped so perfectly.Read the Full Story
As a baby, Weston Walker experienced all of the same issues his mom, Randi, had when she was born. He struggled to breathe. He choked and spit up a lot. He didn’t cut teeth. For Debbie Reed, Randi’s mom and Weston’s grandma, it was heartbreaking to live it all over again. They visited doctor after doctor, asking if this was normal. Read how a diagnosis changed how this grandma looks at life.Read the Full Story
Advocate With Us – On the Hill or at Home – on July 18th
It’s time to take action and raise our voices on Ectodermal Dysplasias Advocacy Day, Wednesday, July 18th. More than 100 people are joining us on Capitol Hill. If you can’t make the trip, you can still help get insurance benefits for dental care and medical care due to ectodermal dysplasia. Contact your members of Congress on the 18th and ask them to support the Ensuring Lasting Smiles Act (ELSA).Learn More