National Foundation for Ectodermal Dysplasias

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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.

10/15/2026

This is what hope looks like. 💙

At our Wound Healing Research Conference in Chicago, families affected by p63 syndromes sat side by side with researchers and doctors. They shared their stories. Some gave tissue samples to help find the first-ever treatment for painful wounds and skin erosions.

We also saw new friendships form, kids coloring together, and little hands held tight on the walk to the clinic.

To every family who traveled to Chicago: thank you. Your courage brings us all closer to healing. 🩹

🤝 Hope for healing woundsIn Chicago, families affected by p63 syndromes shared their stories with doctors and researcher...
10/14/2026

🤝 Hope for healing wounds

In Chicago, families affected by p63 syndromes shared their stories with doctors and researchers. Many also gave tissue samples to help find better ways to heal painful wounds and skin erosions.

To every family who made the trip: thank you. Your courage brings us closer to the treatments our community has been waiting for. 💙

Read the recap: https://nfed.org/blog/wound-healing-conference/

Missing St. Louis? So are we. 💙Our Family Conference family is getting back together on Zoom!📅 Tuesday, Oct. 20🕖 7 p.m. ...
10/13/2026

Missing St. Louis? So are we. 💙

Our Family Conference family is getting back together on Zoom!
📅 Tuesday, Oct. 20
🕖 7 p.m. CT / 8 p.m. ET
⏱️ 45 minutes
✨ Favorite moments from conference
✨ Your stories and wins since July
✨ Small group time by syndrome
✨ First look at the 2027 logo 👀

Comfy clothes welcome. Kids in the background welcome. YOU are welcome.
Attendees, check your inbox for the Zoom link! 💌

💜 We're hiring a Director of Communications!💜 We're hiring a Director of Communications!Are you (or someone you know) a ...
10/13/2026

💜 We're hiring a Director of Communications!

💜 We're hiring a Director of Communications!
Are you (or someone you know) a creative communicator with a heart for making a real difference? The NFED is looking for a Director of Communications to lead how we educate, connect, and inspire individuals and families affected by ectodermal dysplasias around the world.

As a member of our senior leadership team, this hands-on leader will:
🎥 Create educational content for TikTok, YouTube, Instagram, Facebook, and more, making medical and research information accessible for our families
🌍 Elevate the stories of individuals and families affected by ectodermal dysplasias
📅 Write, schedule, and publish our social media, e-newsletters, and email campaigns
💻 Lead the refresh of NFED.org so it's more accessible and welcoming for everyone

Why join us? At the NFED, we're more than a team. We're a community united by a shared purpose. You'll have a seat at the senior leadership table, a direct voice in shaping our future, and the chance to lead high-visibility projects that serve families every day.

Lived experience with ectodermal dysplasias or another rare disease is especially welcome!
💻 Full-time and remote
📅 Apply by November 2, 2026
🔗 Learn more and apply at www.nfed.org/dircomm

Know someone who would be a great fit? Share this post or tag them below! 💜

This , we're reminded that living with ectodermal dysplasia does not just affect physical body, but can also have an im...
10/10/2026

This , we're reminded that living with ectodermal dysplasia does not just affect physical body, but can also have an immense emotional impact.

In a 2021 blog post, Kaitlyn shared her experience navigating the emotional side of living with x-linked hypohIdrotic ectodermal dysplasia (XLHED). She talks about how working with a therapist helped her better understand her feelings and build her emotional vocabulary and talk about her feelings openly with friends, family, and others. Read Kaitlyn’s full story at nfed.org/blog/whats-emotion-got-to-do-with-it/.

Remember, you’re never alone. The NFED community is here to support you every step of the way. 💙

We’re building the spookiest, most spectacular silent auction yet for the 2026 NFED Halloween Bash and we need you! 👻Do ...
10/09/2026

We’re building the spookiest, most spectacular silent auction yet for the 2026 NFED Halloween Bash and we need you! 👻
Do you (or your business) have something to donate?

Think:
Gift cards
Experiences
Luxury handbags
Vacation stays
Sports Tickets
Special baskets or local experiences
…and more!

Your auction item will help us raise critical funds for medical conferences, research, advocacy, and direct support for NFED families across the country.

Submit your auction item at https://nfed.cbo.io/donate-item
Or email us at [email protected] with questions.

Together, we can make this Halloween Bash unforgettable for our community. 🧡

"It's not so much that we need to see ourselves as connected. Rather, we need to become increasingly aware that we are n...
10/08/2026

"It's not so much that we need to see ourselves as connected. Rather, we need to become increasingly aware that we are not separate." 🤝 🫶

A Viking ship captain shared this with Greg Klimovitz, our executive director, while in Copenhagen at this year's Ectodermal Dysplasia International Network (EDIN) leaders' meeting. Organizational representatives from 15 countries gathered, swapped stories, and even learned to row a Viking ship together.

Different languages, different syndromes, one ectodermal dysplasia family. As a founding member of EDIN, the NFED is proud to help make sure that wherever you live, you are not rowing alone. 💙

Read Greg's full reflection: https://nfed.org/blog/our-global-ectodermal-dysplasia-community/

💜 Thank you, Andi! We're saying a bittersweet farewell to Andi Kezh, our Communications Coordinator, as she begins an ex...
10/06/2026

💜 Thank you, Andi! We're saying a bittersweet farewell to Andi Kezh, our Communications Coordinator, as she begins an exciting new chapter in her next role.

During her time with the NFED, Andi has told our community's story so beautifully. Through her words, creativity, and care, she helped families feel seen, connected, and never alone. We are deeply grateful for everything she has given to the NFED and to the ectodermal dysplasias community.

Andi, we are so proud of all you've accomplished and excited to see where this next chapter takes you. We'll miss you!

By joining the Ectodermal Dysplasias Registry, you take your seat at the research table. 🪑 Your story has power!The Regi...
10/05/2026

By joining the Ectodermal Dysplasias Registry, you take your seat at the research table. 🪑 Your story has power!

The Registry is a secure place where families and affected individuals can share their health information and experiences. It’s open to anyone with an ectodermal dysplasia diagnosis in the United States and Canada.

The information helps scientists see patterns that can lead to new treatments. But, the Registry is only effective if families like yours participate.

We invite you to join and create a profile for every person in your family who has the condition! www.nfed.org/registry

10/02/2026

Shoutout to one of our Dental Treatment Centers, the Penn Dental Medicine! 🦷

Dr. Jonathan Korostoff, DMD, PhD, who helped establish this treatment center, has been an integral part of the NFED community and a vital resource for dental care for our families for more than 15 years. He has also served on our Patient Care Council since 2010. We were honored to present Dr. Korostoff with the NFED’s Tender Loving Care Award this year in recognition of his exceptional dental service to families affected by ectodermal dysplasias. We are incredibly grateful for his dedication and contributions to our community!

Looking for a Dental Treatment Center like Penn’s School of Dental Medicine? We partner with experienced providers at universities and in private practices across the U.S. who treat people affected by ectodermal dysplasias, often at more affordable costs.

🦷 Request a referral in your state or region today: https://nfed.org/treat/dental-treatment-options/dental-treatment-centers/

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6 Executive Drive, Ste 2
Fairview Heights, IL
62208

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

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