We empower and connect those touched by ectodermal dysplasias through education, support and research.
Families affected by ectodermal dysplasias often have trouble paying for necessary dental work that's not covered by insurance companies. Teeth are not cosmetic! We need your help to close a loophole in the law that allows insurance companies to deny necessary medical and dental procedures to those affected by congenital anomalies like ectodermal dysplasias. Our advocacy tool makes it easy to reach out to your legislators and affect change. Because of our passionate advocates, we now have more than 290 co-sponsors in the House of Representatives!
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
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Coronavirus and Ectodermal Dysplasias
You and your family’s health are our priority as we go through this coronavirus (COVID-19) pandemic together. It’s important to be safe and stay informed. We are here to offer you resources and support.
- Jul 15, 2020 Virtual Kays’ Kids Camp and Teens Program – Week 3
- Jul 16, 2020 Webinar: Let’s Talk EEC
- Jul 22, 2020 Virtual Kays’ Kids Camp and Teens Program – Week 4