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.

Last week, NFED advocates made an impact during our ELSA Summer Call-to-Action Week! đź“Ł Together, our advocates sent 270 ...
09/05/2026

Last week, NFED advocates made an impact during our ELSA Summer Call-to-Action Week! 📣 Together, our advocates sent 270 emails to 84 congressional offices across 23 states, helping keep the Ensuring Lasting Smiles Act (ELSA) on lawmakers’ radar. And the momentum is growing. In the past week, 16 new House cosponsors have joined ELSA, bringing the total to 193!

Thank you to everyone who sent a letter, shared our campaign, and encouraged others to take action. Your voices are making a difference, and we’re not slowing down now.

Want to take your advocacy to Capitol Hill with us? Join the NFED in Washington, D.C., on October 14 to meet with legislators and ask for their support of ELSA. A limited number of travel stipends are available. Contact [email protected] for more information.

Let’s keep this momentum going and make sure Congress hears from the ectodermal dysplasias community!

Will you help us fund the next research breakthrough? www.nfed.org/donateYour support is helping move research forward t...
09/04/2026

Will you help us fund the next research breakthrough? www.nfed.org/donate

Your support is helping move research forward through new seed research grants, an international Wound Healing Conference, the launch of the Ectodermal Dysplasias Registry, and the leadership of our new Director of Research. And with the groundbreaking Edelife Clinical Trial, we are closer than ever to what could become the first future treatment for XLHED in baby boys.

Every gift makes a difference. No matter the size, your donation helps fund the research that can lead to breakthroughs and create brighter futures for people and families affected by ectodermal dysplasias.

Living with ectodermal dysplasia means searching for answers that are not always easy to find. More and more, people in ...
09/03/2026

Living with ectodermal dysplasia means searching for answers that are not always easy to find. More and more, people in our community are turning to AI for help, and that is worth an honest conversation. What are the real opportunities? What are the risks? What are your rights?

We are honored to welcome Spencer Morrissey of the National Health Council alongside an incredible panel of expert providers and community voices, including Clayton Butcher, MD; Patricia Marik, PsyD, MA; senior marketing manager and mom to an affected child Sam Mueller; and NFED staff members Greg Klimovitz and Kelley Atchison.

Join us Tuesday, September 15 at 8pm ET / 7 pm CT for this free webinar. Register for the Zoom link here: www.nfed.org/aiwebinar

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. đź’¦ Read our latest blog at https://nfed.org/blog/what-does-it-feel-like-to-overheat-when-you-cant-sweat/

The next research breakthrough starts with you: www.nfed.org/donate.🔬For 45 years, the NFED has built the research found...
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.

It’s back-to-school season! Will you share your child’s school pictures with us this year? We want to celebrate the amaz...
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. đź“š Drop their back-to-school photos in the comments so we can cheer them on as they start a new school year! đź’™

*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! đź“ť Sign up today for the Ectodermal Dysplasias Registry at www.nfed.org/registry

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

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

This year, more than 45 volunteers gave nearly 260 hours of their time during Family Conference weekend! đź’ś If you attend...
08/25/2026

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

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/

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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