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, 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.

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/

How do you share your ectodermal dysplasia diagnosis with others? Whether talking with a romantic partner, friends, fami...
06/02/2026

How do you share your ectodermal dysplasia diagnosis with others? Whether talking with a romantic partner, friends, family, teachers, employers, or other peers, knowing what to say and when to say it can feel overwhelming.

Our newest webpage shares guidance, practical tips, downloadable resources, and insights from Dr. Patricia Marik, pediatric psychologist at the Medical College of Wisconsin, to help navigate these conversations with confidence.

💙 Learn more about sharing an ectodermal dysplasia diagnosis and explore available resources: https://nfed.org/thrive/sharing-a-diagnosis/

The NFED Miles for Smiles Challenge is officially LIVE. Whether you're heading out for a morning run, hopping on your bi...
06/01/2026

The NFED Miles for Smiles Challenge is officially LIVE. Whether you're heading out for a morning run, hopping on your bike, walking your kids to the park or stepping on the treadmill, every mile you log this month makes a difference for families affected by ectodermal dysplasias.

📍 Log your first miles. Share your page. Tag us in your journey… we'll be cheering you on every step of the way. Let's move. Let's make it count! Start tracking today: https://nfed.org/events/miles-for-smiles/

It's your last chance to receive a free 2026 Family Conference t-shirt (included in your conference swag bag) when you r...
05/29/2026

It's your last chance to receive a free 2026 Family Conference t-shirt (included in your conference swag bag) when you register by May 31!

You won’t want to miss 3 incredible days this summer in St. Louis filled with connection, learning, and community alongside individuals and families affected by ectodermal dysplasias. 💜 Register today at www.nfed.org/fc2026

For 45 years, the NFED has been here to support individuals and families affected by ectodermal dysplasias. 💙Support is ...
05/27/2026

For 45 years, the NFED has been here to support individuals and families affected by ectodermal dysplasias. 💙

Support is one of the five core pillars of our mission, and it guides everything we do. From expert medical evaluations, treatment assistance, family liaison outreach, private social media support groups, and simply being a shoulder to lean on, we are here for you at every step of your journey from diagnosis to a thriving lifetime.

Because of you, this community continues to grow stronger.
Thank you for helping us provide meaningful support to those who need it most. Here’s to 45 more years!

When Beth's son, Liam, was diagnosed with X-linked hypohidrotic ectodermal dysplasia (XLHED), she already understood wha...
05/26/2026

When Beth's son, Liam, was diagnosed with X-linked hypohidrotic ectodermal dysplasia (XLHED), she already understood what the NFED could mean for a family affected by ectodermal dysplasia.

Now, she’s creating something new: a month-long virtual movement challenge called Miles for Smiles. She's inviting people of all abilities to move, share their stories, and help families affected by ectodermal dysplasias feel less alone, all while giving back to the NFED. No minimum distance. No required equipment. And all movement in June counts.

🏃 🚴 🏊 ⛷️ Read how one mom is turning connection into action this June! https://nfed.org/blog/join-nfed-miles-for-smiles/

Please help us welcome Victor from Ecuador 🇪🇨 who officially joined the NFED as a member in April 2026!“At six months ol...
05/25/2026

Please help us welcome Victor from Ecuador 🇪🇨 who officially joined the NFED as a member in April 2026!

“At six months old, I was diagnosed with ectodermal dysplasia. I love sports, and while heat has always been a challenge, it has never stopped me. I'm now 40 years old, and on April 11, 2026, I completed a 50km trail race with more than 3,800 meters of elevation gain. The only thing I can say is that I am happy this condition does not stop me from fulfilling my dreams.”

Have you registered as an NFED member yet? Join more than 11,100 individuals and families in our global ectodermal dysplasias community. Becoming a member is more than joining an email list. It’s your connection to support, resources, education, advocacy, and a community that understands your journey.

Register as a member today: www.nfed.org/join-us

We are overjoyed to share that we exceeded our spring fundraising goal to raise $45,000 in 45 days to celebrate 45 years...
05/24/2026

We are overjoyed to share that we exceeded our spring fundraising goal to raise $45,000 in 45 days to celebrate 45 years of the NFED! Thank you to everyone who donated, supported, or even just shared a post or forwarded an email.

Our community showed up and we are beyond grateful! Brighter futures are certainly ahead for all those affected by ectodermal dysplasias!

This June, lace up, dive in, or saddle up for a cause that changes lives. The NFED Miles for Smiles Challenge is a virtu...
05/23/2026

This June, lace up, dive in, or saddle up for a cause that changes lives. The NFED Miles for Smiles Challenge is a virtual month-long movement: walk, run, swim, bike, skate, ski, or treadmill your way toward a future where every person and family affected by ectodermal dysplasias has the support they need.

This challenge is being led by Beth Orchard, whose son, Liam, is affected by X-linked hypohidrotic ectodermal dysplasia (XLHED).

Pledge your miles, rally your sponsors, and let’s move together... wherever you are!

🏃🏊 🚴 ⛷️ Sign up now and build your fundraising page before June 1! www.nfed.org/events/miles-for-smiles/

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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