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 MoreWe’re here to listen and provide support
Connecting with someone who knows exactly what you're going through can be a huge relief.
Stories of Hope
First Dentures for Hazel: Her Mom’s Perspective
First Dentures for Hazel: Her Mom’s Perspective
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.
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Jeronimo, Our Teacher
Jeronimo, Our Teacher
Jorgelina, a mother in Argentina, was shocked and sad when one of her twin sons was diagnosed with ectodermal dysplasia. As an English teacher, she decided to learn everything she could. But, it was her son, Jeronimo, who became her best teacher and changed her attitude.
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Clouston Syndrome: Perfectly Different
Clouston Syndrome: Perfectly Different
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.
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The Road Less Traveled
The Road Less Traveled
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.
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Meet Your Ectodermal Dysplasias Community at the Family Conference
You have a few weeks lefts to register for the Family Conference! It will be three jam-packed days you won’t want to miss. Find answers to your questions. Meet one-on-one with medical and dental experts. Sign up to volunteer for one of the three ectodermal dysplasia research opportunities. Connect with other families. It’s going to be a great experience. Don’t miss it!
Learn More and RegisterUpcoming Events
- Jul 11, 2019 2019 Family Conference
- Jul 16, 2019 Ectodermal Dysplasias Advocacy Day 2019
- Sep 15, 2019 Don’t Sweat It Walk/Run – Minnetonka, MN