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.
Advocating for the Ensuring Lasting Smiles Act
People in the United States who are affected by ectodermal dysplasias have endured decades of claim denials from their health benefit plans for medically necessary dental care. We are advocating for a law that would change that.
Learn More and Contact Your Legislators
Stories of Hope
Watching your baby girl – who is only 5 – get fitted for her first pair of dentures can be an emotional journey. Read how Sarah Hamilton is navigating the process and find out what she’s learned about her daughter, herself and ectodermal dysplasia.Read the Full Story
Addison Kemper spent her life being told she’s perfect, but knowing she was different. She had little hair and problems with her nails. Kids bullied her. Life was hard at times. She knew she must have a condition of some kind but found no answers. Her baby’s arrival led her to a diagnosis for both: Clouston syndrome. Those two words opened the door a new world.Read the Full Story
Priscilla and Ryan’s newborn baby struggled to feed in the neonatal intensive care unit. He just wouldn’t take a bottle and the family was frantic for answers as to why. The solution and ultimately an ectodermal dysplasia diagnosis came from their nurse, whose expertise was learned first-hand.Read the Full Story
Baby Oakley had a hard time feeding. Watching your baby not be able to swallow can be terrifying. He had projectile vomiting and wasn’t gaining weight. His parents begged doctors to help their baby boy. A hospital stay and many tests later, they figured it out. This information coupled with a trip to the dentist led to a diagnosis of ectodermal dysplasias. Find out how Oakley is feeding now.Read the Full Story
Registration is Now Open for the Family Conference!
Resolve to make 2019 the year you attend the Family Conference. Find answers to your questions. Meet one-on-one with medical and dental experts. Learn about the latest research for XLHED and the pending clinical trial. Connect with other families.Learn More and Register