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
Adopting My Daughter With Goltz Syndrome
Adopting My Daughter With Goltz Syndrome
Choosing to adopt a child with a rare condition can be daunting. Caroline Ruhl has done it twice. Read about the journey that led her to adopting a spunky and beautiful child who happens to have Goltz syndrome.
Read the Full Story
Miss Wiggy
Miss Wiggy
Hi, My name is Niamh and I’m 17, from West Yorkshire. I started wearing wigs when I was 16. I was born with a skin disorder called ectodermal dysplasia (Hay Wells syndrome) causing alopecia. I have two wigs currently. I cannot explain how amazing these wigs make…
Read the Full Story
How I Replaced the Lonely Feeling With Hope
How I Replaced the Lonely Feeling With Hope
Briana Pinon felt incredibly alone when her baby was diagnosed with ectodermal dysplasia. That all changed when she connected with the National Foundation for Ectodermal Dysplasias. This mom talks about finding resources, connecting with other families and teaching her son about his condition.
Read the Full Story
PROSE Lenses Give Super E the Ability to See
PROSE Lenses Give Super E the Ability to See
“Ethan has overcome everything that has happened. He has remained positive. – Natalie Kranig Ethan Kranig did not earn the nickname “Super E” for nothing. At nine years old, Ethan continues to prove time and again that he is a fighter in facing the many…
Read the Full Story
ANNOUNCING A WEEK OF ACTION TO GET YOU DENTAL CARE COVERAGE
Next week, we will announce several opportunities in our Autumn is for Advocacy campaign for you to make your voice heard about the need for a bill for health benefits for dental care of ectodermal dysplasias. Families, we need you to take action, to advocate.
Learn More
Upcoming Events
- Oct 21, 2017 Jayden’s Halloween Hustle
- Oct 27, 2017 Heartland Families Get Together