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.
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
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
By Brian Brubaker Overheating hasn’t been something that Kindergartner Emily Rose Brubaker has had to deal with very much so far growing up in Alaska. Normally in Alaska, hyp-O-thermia is much more common that hyp-ER-thermia. But in the middle of the Alaska winter, when the…Read the Full Story
What have you let set you back today? This is a question that Cody Snell can answer with a smile. He has he never let anything including his x-linked hypohidrotic ectodermal dysplasia (XLHED) keep him from anything. That includes playing sports year round while growing…Read the Full Story
By Debbie Fenoglio I was pregnant with my second son, Benjamin, in the late summer of 2011 when it was first suggested that my oldest son, Jackson, had ectodermal dysplasia. Like many before me, I had not heard of ectodermal dysplasia. It was offered by…Read the Full Story
Ectodermal dysplasia runs in Kylie Reeder’s family. After she married, her in-laws learned that the daughter they are adopting may also share the condition.Read the Full Story
Counting Down to Family Conference and First Advocacy Day
We can’t wait till July when we will welcome more than 450 people to our Family Conference in Falls Church. This will be the largest gathering in history of our ectodermal dysplasias community. More than 170 of our voices will be heard on Capitol Hill for the first Ectodermal Dysplasias Advocacy Day on July 19. We have all of details you need to know to make your trip one to remember!Learn More