Ectodermal dysplasias are rare genetic disorders that affect about 3 out of 10,000 babies. They cause the parts of the body like hair, teeth, nails, sweat glands and skin to develop and function abnormally. With more than 100+ different types of ectodermal dysplasias, it’s challenging for families to find answers and for healthcare professionals to offer treatments or cures. But that’s not stopping us!

We celebrate Ectodermal Dysplasias Awareness Month each year in February. But no matter the time of year, you can spread the word about these rare conditions and join us in raising up this incredible community through research, advocacy and more.

Rise up for rare


Register for Virtual Advocacy Day

Join us in advocacy as we continue to fight to get the Ensuring Lasting Smiles Act (ELSA) passed in this session of the U.S. Congress. On April 28th, we’ll hit the phones together to educate legislators and ask them to co-sponsor the bill and help move it through Congress.

See the details and register

Join Us for a Webinar

Join us for a webinar to meet medical and dental experts, hear their advice concerning ectodermal dysplasias and have the unique opportunity to ask questions. See the full lineup of Conference from Your Couch webinars for 2021.

Explore Upcoming Webinars

Connect with us on social media for opportunities to raise awareness throughout the year.

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Become a Member

NFED offers a community of 9,000 families, care providers and volunteers that provide support and friendship. Join us and get connected.

Advocate for Smiles

Learn why the Ensuring Lasting Smiles Act is critical for families affected by ectodermal dysplasias and register as an advocate.

Share Your Story

If you’ve seen our Stories of Hope, you know how powerful it can be to tell others about your experience with ectodermal dysplasias.

Spread the Word

Educate your community by sharing facts, videos and resources about ectodermal dysplasias.


“I am so grateful the NFED was there for us!” Kathy said. “They provided us with a wealth of information not available anywhere else. They provided hope for us for Olivia’s health and future and a sense of relief that we didn’t have to face this alone.”

Kathy Daniel, “The Amazing Power of Hope”

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