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
By Tova Fuller, M.D., Ph.D. I was three or four years old when my mother was distressed my teeth just weren’t coming is as they should have. A dentist diagnosed me with ectodermal dysplasia, and within time, it became clear that I could not sweat…Read the Full Story
By Shannon Brown Our daughter, Erin, is five years old and is affected by ankyloblepharon-ectodermal defects-clefting (AEC) syndrome, a form of ectodermal dysplasia. She was born with extensive and severe skin erosions. Since she was weeks old, the National Foundation for Ectodermal Dysplasias (NFED) has been…Read the Full Story
By Lindsey James Like many of you, my path to discovering the National Foundation for Ectodermal Dysplasias (NFED) started with a search for answers or pieces of the puzzle, a Google search to be exact. After nearly two years of unexplained fevers, chronic respiratory illness…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