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
Supporting You. Supporting Each Other.
Connecting with someone who knows exactly what you're going through can be a huge relief.
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 x-linked hypohidrotic ectodermal dysplasia (XLHED) with a protein called ED1200…Read the Full Story
By Matt Nehrkorn Hi all! We are the Nehrkorn family from Wilsonville, Ore. We thought we were living an average everyday life until my youngest son, Oliver, turned 18 months of age. My wife, being a dental hygienist, found it odd that he had yet to pop his first tooth. We put him in her exam…Read the Full Story
By Karen Forman My favorite quote of late has been Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain. Thirty-three years ago, I was not that wise. Now I dance. Evan is a smart, engaging and talented adult with a unique beginning into this world. So, Evan…Read the Full Story
By Jill Dolde My son Nathan (Nate) turned seven on November 19th. He has blessed me and my husband in so many ways. Nathan is our only child. As first-time parents, we were scared hearing something does not look when your child was born. His scalp was very dry, flaky and red right after birth….Read the Full Story
Register Now: Family Conference
The Family Conference is for everyone affected by ectodermal dysplasias and their loved ones. Our caring staff and families will welcome you with open arms and understanding. You will quickly experience – not just know – that you are not alone. This year, you have the added opportunity to advocate on Capitol Hill and participate in research at the National Institutes of Health.Learn More