We are rare and resilient.

Ectodermal Dysplasia Awareness begins with YOU!

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Newly Diagnosed?

If you or someone you know is navigating a new ectodermal dysplasia diagnosis, start here. Our Family Guide offers vital resources, support, and hope.

With the NFED, you’re never alone. You are rare. You are resilient. 

Download the Awareness Month Flyer

Ectodermal dysplasias are rare genetic conditions affecting hair, teeth, nails, sweat glands, and skin. With over 50 types impacting 14 in 100,000 new births, diagnosis and treatment can be complex.

Learn More

Join a supportive community of over 10,660 families, care providers, and volunteers. Gain access to resources, connections, and our monthly 5 Things newsletter uniquely designed for YOU!

Join Us

The NFED has led XLHED research for 30+ years, leading to a potential in utero treatment. The EDELIFE clinical trial is currently seeking volunteers to confirm its safety and efficacy. Learn more about participating if you or your family are affected by XLHED. 

Learn about the Study

Share Your Story

Help spread awareness by sharing your experience with ectodermal dysplasias. Your story can inspire others and remind them they’re not alone. Click below to share yours and make a difference.

Share Your Story

Think you or a loved one might have ectodermal dysplasia? Explore our comprehensive resources to help identify symptoms, navigate treatment options, and find the support you need.

Find Treatment Support

Discover others in your local area, find a family liaison, or join our private Facebook groups for support and shared experiences.

Get Connected

ELSA logo

Join the effort to educate others and support critical legislation for those with ectodermal dysplasias. Learn why the Ensuring Lasting Smiles Act is critical for families affected by ectodermal dysplasias and register as an advocate.

Register as an Advocate

Start a Facebook fundraiser, organize a 5K, or get creative! Big or small, your efforts help raise funds and awareness to support the NFED mission. Contact Isabella, our Development Coordinator.

Fundraise for the NFED

Download I am rare & resilient poster
Download Ectodermal Dysplasia Facts

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Have you moved, changed jobs, or just gotten a new email address? Update your profile with your latest contact information so you don’t miss important news and announcements!

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“It’s really cool that there’s like a big group of people out there who have this whole program just dedicated to this rare disease that I have myself.”

Emily, “Rising to the challenge: Emily’s Inspiring journey from advocate to civics bee champion.”