National Foundation for Ectodermal Dysplasias

National Foundation for Ectodermal Dysplasias Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from National Foundation for Ectodermal Dysplasias, 6 Executive Drive, Ste 2, Fairview Heights, IL.
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Together, we enrich the lives of people affected by ectodermal dysplasias by fostering community, providing education and support, and driving advocacy and groundbreaking research.

There’s still time to share your ectodermal dysplasia story through our ART-Vocacy contest!Whether it's photography, poe...
06/19/2026

There’s still time to share your ectodermal dysplasia story through our ART-Vocacy contest!

Whether it's photography, poetry, drawing, video, or mixed media, every form of creative expression is welcome. No artistic experience is required, just your unique perspective.

Entries will be reviewed by a judging panel made up of NFED community members of all ages. They will evaluate submissions based on emotional resonance, connection to the theme, and creativity. And don’t forget, YOU get a vote, too! Community voting for the Youth T-Shirt Design Contest People's Choice Award will open soon, giving everyone a chance to support their favorites.

🎨 Submit your entry by June 30: www.nfed.org/artvocacy

Cost should never stand in the way of essential care. The NFED's Treatment Assistance Program (TAP) helps individuals an...
06/18/2026

Cost should never stand in the way of essential care. The NFED's Treatment Assistance Program (TAP) helps individuals and families affected by ectodermal dysplasias in the United States access the treatments and resources they need.

2026 financial assistance is still available for wigs, dental treatment, air conditioners, cooling vests, and genetic testing. If you meet the income requirements and have a diagnosis of ectodermal dysplasia living in the U.S., you may qualify.

Learn more and apply today: https://nfed.org/treat/treatment-assistance-program/

“I can honestly say my journey has not been easy. As a young adult it still gets hard. But I am now more confident in my...
06/16/2026

“I can honestly say my journey has not been easy. As a young adult it still gets hard. But I am now more confident in myself. I know that I am a great person. I’m intelligent, caring, and more. Most of all, I know my worth! My syndrome does NOT and never will define me! I am an example of a person that has and will continue to face challenges, but can successfully push through them."

Jalen's ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome story is filled with honesty, humor, and heart. She shares how she handled hair loss, bullying, and everyday challenges while building confidence along the way. Read her blog at https://nfed.org/blog/jalens-eec-syndrome-story/

Have you joined our Miles for Smiles challenge yet?It's a month-long virtual movement this June: walk, run, swim, bike, ...
06/14/2026

Have you joined our Miles for Smiles challenge yet?

It's a month-long virtual movement this June: walk, run, swim, bike, skate, water ski, or treadmill your way toward a future where every family affected by ectodermal dysplasias has the support they need.

Whether you're running, biking, swimming, walking the dog, or logging miles on a treadmill, every mile completed this June helps support individuals and families affected by ectodermal dysplasias.

⏱️ Set your goal, build your page, and share your progress. Join the challenge today: https://nfed.org/events/miles-for-smiles/

"It [ectodermal dysplasia] really is just such a non-issue, and I don’t know how else to convey that. And to me, the stu...
06/13/2026

"It [ectodermal dysplasia] really is just such a non-issue, and I don’t know how else to convey that. And to me, the study is the reason for that. We just live life without any thought of ectodermal dysplasia, you know? Except for that twice-yearly dentist visit when I bring it up.”

Laura chose to participate in a clinical trial treatment for x-linked hypohidrotic ectodermal dysplasia (XLHED) in 2021 for their unborn son, Bennett. Now in pre-K, Bennett continues to sweat normally, and has developed six permanent teeth so far with at least four more (already seen on X-ray) expected to erupt. He wears a fixed partial on the upper, but he has not had any issues with eczema, respiratory issues, dry mouth, dry eyes, nasal rocks or other typical symptoms.

Nicknamed “the fast kid” by the other soccer parents, Bennett typically scores every goal in their games. He also loves baseball, basketball, football, bike riding, ice skating and hoverboarding.

Laura hopes other moms that carry the XLHED gene see that the prenatal treatment does make a big difference for baby boys.

This treatment is now being studied in the Edelife Clinical Trial. You might be eligible to participate - and it’s FREE! Please share trial information with any female relatives who are 18-45 and who are also affected or may be affected by HED/XLHED. Learn more at www.nfed.org/edelife

Have questions? Reach out to us by emailing [email protected].

Looking for open and honest discussions with people who really get it? Family Conference is your chance to attend family...
06/11/2026

Looking for open and honest discussions with people who really get it? Family Conference is your chance to attend family and peer-led breakout sessions and panels this summer, including the Returning Member Forum, Ask Me Anything Panel, Syndrome-Specific sessions, Grandparents & Extended Family Members session, and Young Adults: Navigating Life & Self-Advocacy session.

Regular registration pricing has been extended through June 30. Register today at www.nfed.org/fc2026 and join us this July in St. Louis!

Liam may only be nine years old, but he’s already making a difference on Capitol Hill. Alongside NFED families and other...
06/09/2026

Liam may only be nine years old, but he’s already making a difference on Capitol Hill. Alongside NFED families and other patient advocates, he shared his journey living with ectodermal dysplasia and the challenges of getting dentures.

Read how NFED advocates like Liam and Sara, Andie, Hannah, Kerri, Lucia, Nikki, Rebekah, and staff joined other patient advocates, dentists and researchers on Capitol Hill. They were there to tell the whole story of how insurance denials affect medically necessary patient care and why we must pass the Ensuring Lasting Smiles Act (ELSA). https://nfed.org/blog/nfed-joins-national-advocacy-groups/

Together, we’re speaking up, building connections, and working together to improve care, research, and insurance coverage for our community.

Special thanks to Coalition of Skin Diseases, American Association for Dental, Oral and Craniofacial Research, American Dental Education Association, and Friends of the National Institute of Dental and Craniofacial Research (NIDCR) for their invitations to attend their advocacy days on Capitol Hill.

For many people living with ectodermal dysplasias, hot weather can bring serious challenges due to hypohidrosis. Our coo...
06/08/2026

For many people living with ectodermal dysplasias, hot weather can bring serious challenges due to hypohidrosis. Our cooling guide provides essential information to help you stay safe this summer.

Learn about hypohidrosis, the signs and symptoms of overheating, prevention strategies and emergency responses, sports participation and everyday activities, the importance of air conditioning, and cooling products and tools that can help.

💧 Download your free cooling guide today: https://nfed.org/learn/library/cooling-guide/

Our final registration deadline is approaching fast on June 30 and we've extended our regular pricing as a special 45th ...
06/06/2026

Our final registration deadline is approaching fast on June 30 and we've extended our regular pricing as a special 45th anniversary gift! We've already reached 350 attendees this year. Will you join us?

Get ready for an unforgettable experience where trusted guidance meets the heart of our ectodermal dysplasias community. Join us for social events, expert-led sessions, dental evaluations, shared meals, and a special celebration of the NFED’s 45th anniversary.

💜 Register now before it’s too late: www.nfed.org/fc2026

Have you submitted your entry to our community art contest yet?No artistic experience required, just tell your story in ...
06/03/2026

Have you submitted your entry to our community art contest yet?

No artistic experience required, just tell your story in whatever way feels true to you. Photography, poetry, drawing, video, or mixed media is allowed.

Open to:
• Individuals living with ectodermal dysplasias
• Family members, caregivers, and supporters
• Youth creators under 18 in a dedicated Youth Division

🎨 Submit your entry by June 30: https://nfed.org/artvocacy/

Address

6 Executive Drive, Ste 2
Fairview Heights, IL
62208

Opening Hours

Monday 8am - 4pm
Tuesday 8am - 4pm
Wednesday 8am - 4pm
Thursday 8am - 4pm
Friday 8am - 4pm

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