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.

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/

05/22/2026

From meeting others who truly understand your ectodermal dysplasias journey, to building lifelong friendships, NFED Family Conference creates memories and relationships that last far beyond the weekend.

Every story shared, every conversation had, and every connection made reminds us that no one has to walk this journey alone.

💙 Register today before prices increase again on May 31st at www.nfed.org/fc2026

This , we're spotlighting the importance of mental health while living with ectodermal dysplasias. Navigating a rare ge...
05/21/2026

This , we're spotlighting the importance of mental health while living with ectodermal dysplasias. Navigating a rare genetic condition can be physically challenging, but it can also take an emotional and mental toll on individuals, children, and families.

Whether you're facing a diagnosis for the first time or navigating ongoing anxieties and challenges in day-to-day life, it's important to seek support when you need it. Speaking with a mental health provider can make a meaningful difference.

The NFED offers a dedicated resource page with guidance on finding a mental health provider, including tips on who to see, online resources, and helpful questions to ask a potential therapist for yourself or your child.

You are never alone in our community. 💙
Learn more: https://nfed.org/treat/choosing-doctor-dentist/find-a-mental-health-provider/

The NFED was proud to attend Coalition of Skin Diseases (CSD) Annual Capitol Hill Day this week! Kristin Matus-Kelso, Fa...
05/20/2026

The NFED was proud to attend Coalition of Skin Diseases (CSD) Annual Capitol Hill Day this week! Kristin Matus-Kelso, Family and Community Programs Coordinator, joined Sara Gilbert and her son, Liam, alongside 70+ advocates from across the country to meet with legislators and advocate for patients and families affected by skin conditions.

We showed up because behind every legislative ask is a real person whose life is impacted. Individuals living with ectodermal dysplasias face insurance barriers, limited access to treatment, and a lack of awareness every single day. Advocacy events like this help drive meaningful change.

Because ectodermal dysplasias directly impact the skin, CSD’s mission to expand access to quality care and life-changing treatments is deeply personal to our community. We’re grateful to stand together with fellow advocates working toward a better future for rare disease patients and families everywhere.

"Kamiah entered the world small but mighty. From the very beginning, she carried a diagnosis that many people had never ...
05/19/2026

"Kamiah entered the world small but mighty. From the very beginning, she carried a diagnosis that many people had never heard of, incontinentia pigmenti (IP). The name sounded big. Clinical. Complicated. But Kamiah? She was simply a baby. A beautiful baby with bright eyes and a spirit that refused to be dimmed."

Living with incontinentia pigmenti, a type of ectodermal dysplasia, Kamiah learns to turn stares into strength and questions into confidence. Guided by her family’s love and faith, she discovers that being different is her greatest gift. And, her story just might help another child shine, too.

💜 Read her mother's full blog at https://nfed.org/blog/living-with-incontinentia-pigmenti/

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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