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

National Foundation for Ectodermal Dysplasias

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Fairview Heights, IL
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, Charitable organisation, 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.

09/02/2026

Ever wonder what it actually feels like to overheat when you can't sweat? We asked people in our community to share their experience with hypohidrosis in their own words.

Plus, get the early warning signs every parent should know, especially if your little one can't tell you they're too hot yet. 💦 Read our latest blog at https://nfed.org/blog/what-does-it-feel-like-to-overheat-when-you-cant-sweat/

08/31/2026

The next research breakthrough starts with you: www.nfed.org/donate.🔬

For 45 years, the NFED has built the research foundation families once only hoped for. Today, more than 50 syndromes still demand answers, and we are closer than ever to meaningful advances in treatment.

This year, that means funding new research seed grants, an international Wound Healing Conference, the launch of our new Ectodermal Dysplasias Registry, and a new Director of Research leading the way. Future breakthroughs are closer than ever with the groundbreaking Edelife Clinical Trial leading us towards what could be the first future treatment for XLHED in baby boys.

Your gift, no matter how small, helps us fund the next research breakthrough to create brighter futures for all those impacted by ectodermal dysplasias.

08/30/2026

It’s back-to-school season! Will you share your child’s school pictures with us this year?

We want to celebrate the amazing students in our ectodermal dysplasias community. 📚 Drop their back-to-school photos in the comments so we can cheer them on as they start a new school year! 💙

*By sharing your photos, you give NFED permission to use your image for future marketing purposes.

08/29/2026

Help make a difference in the ectodermal dysplasias community! 📝 Sign up today for the Ectodermal Dysplasias Registry at www.nfed.org/registry

08/28/2026

Will you take action on the last day of our ELSA Summer Call-to-Action Week? ⏰ 2 minutes. One letter. www.nfed.org/elsa.

Craniofacial genetic conditions aren’t cosmetic. Missing teeth aren’t cosmetic. Eating and speaking aren’t cosmetic. The Ensuring Lasting Smiles Act (ELSA) would require insurance companies to cover medically necessary treatments for people with craniofacial conditions. But if Congress doesn’t act, this bill dies at the end of the year.

This is our moment to make sure Congress hears us. Will you take two minutes to contact your federal legislators and urge them to support ELSA?

08/26/2026

We’re halfway through our ELSA Summer Call-to-Action Week! Have you taken action yet? It only takes 2 minutes: www.nfed.org/elsa

We’ve already had 204 actions taken in 18 states so far! Help us keep the momentum going and amplify the Ensuring Lasting Smiles Act (ELSA) in Congress. ELSA would require insurance companies to cover the medically necessary treatments that people affected by ectodermal dysplasias and other craniofacial genetic conditions need. But the bill dies at the end of this year if Congress doesn’t act.

Take action right now and make your voice heard!

08/25/2026

This year, more than 45 volunteers gave nearly 260 hours of their time during Family Conference weekend! 💜

If you attended Family Conference in Chesterfield, Missouri this July, chances are you encountered a volunteer at every turn. From welcoming you with your attendee bag to helping keep dental evaluations on schedule and making sure the hospitality room stayed stocked, our volunteers helped make the weekend special.

We're also extremely grateful to the healthcare professionals from our Patient Care Council who donated their time and expertise, as well as our Board Members.

Read our latest blog to learn more about the incredible impact our volunteers make: https://nfed.org/blog/nfed-family-conference-volunteers-260-hours-of-heart/

08/24/2026

Craniofacial genetic conditions aren't cosmetic. Missing teeth aren't cosmetic. Eating and speaking aren't cosmetic.

The Ensuring Lasting Smiles Act (ELSA) requires insurance companies to cover the medically necessary treatments we need, and the bill dies at the end of this year if Congress doesn't act.

2 minutes. One letter. Take action RIGHT NOW at www.nfed.org/elsa.

Today marks the start of our ELSA Summer Call-to-Action Week! This week, we’re proud to partner with the American Student Dental Association (ASDA), uniting 23,000 future dental professionals to amplify ELSA in Congress. Will you join us and reach out to your federal legislators right now?

08/22/2026

Today is ! 🦷 For people living with ectodermal dysplasias, getting a new set of dentures can feel scary or overwhelming, especially for children. Bringing in the Tooth Fairy can help turn a big milestone into something fun and exciting!

When your child gets a new set of dentures, consider placing their old set under the pillow for the Tooth Fairy to take. This special tradition can help celebrate their new smile and make the experience feel a little more magical.

Make the celebration even more special with our Tooth Party Kit, packed with fun activities and tips to celebrate this milestone. Get your Tooth Party Kit: https://nfed.org/learn/library/tooth-party-kit/

Another creative approach is to have the Tooth Fairy send a letter to your child! Here's an editable letter you can customize when they get their new dentures or dental work done. https://canva.link/ge0anqzdii7cvi6

Do you have a special way of celebrating your or your child’s new teeth? Share it with us below! 🎁

08/19/2026

"We wanted her to have dentures to have a nice smile when she is taking pictures. And we didn't want her to face being picked on for not having a full set of teeth like the other kids, and for her to grow up with a low self-esteem, cause I had to go through that. My first pair, my teeth weren't very long and I had to force myself to open up my smile for people to see my teeth. I was picked on and I don't want her to go through the same thing."

Otis knows how important smile can be because he grew up with ectodermal dysplasia, too. He wanted his four-year-old daughter Mia to have a smile to be proud of. The NFED was honored to help make that possible. Through our Dental Treatment Center and Treatment Assistance Program, the NFED helped Mia get the denture she needed.

🦷 Read our latest blog to learn about Mia’s first denture adventure and the smile that makes her shine: https://nfed.org/blog/the-smile-that-makes-mia-shine/

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

Website

http://www.nfed.org/

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