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
What’s going on with the research for x-linked hypohidrotic ectodermal dysplasia (XLHED) and EDI200? Last January, I announced that Edimer Pharmaceutical’s Newborn XLHED Clinical Trial did not achieve the outcomes which we had hoped for. In that trial, they dosed newborns who were affected by…Read the Full Story
An NFED dad and self-described introvert finds the strength in being vulnerable and the power that comes from sharing your story. He and his family share how they are facing his son’s challenges with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome and using it as an opportunity to raise awareness and funds.Read the Full Story
Tova was diagnosed around age three with ectodermal dysplasia. Since then she has overcome bullies, dentists who should not have treated her, awarded the title of Miss Teen Dance of Chicago in high school, earned three graduate degrees, including a Ph.D. in human genetics and an M.D. Learn what having ectodermal dysplasia has taught her.Read the Full Story
Register Now For Family Conference and Advocacy Day
Spring may be here but we are getting excited for summer! You will want to join in on the fun. Join your ectodermal dysplasias community in Falls Church, Virginia, July 19-22 for the 36th Annual Family Conference. This year, we are also going to Capitol Hill to tell legislators about our experiences with ectodermal dysplasias and advocate for change. We are expecting a big turnout. Don’t delay. Register today!Learn More and Register to Participate