The National Foundation for Ectodermal Dysplasias (NFED) is in a period of exciting growth as we welcome two exceptional additions to our team —Andi Kezh and Isabella Redding. Their roles as Communications Coordinator and Development Coordinator bring critical skills necessary to amplifying our mission, increase our resources, and better support individuals and families affected by ectodermal dysplasias.
You Wanna Be Where Everybody Knows Your Name: Family Conference 2025
The NFED Family Conference is more than an event—it’s where connections thrive, and worries melt away. Like the Cheers theme song, it’s a place “where everybody knows your name.” Don’t just take Kelley Atchison’s word for it. Listen as NFED families share the impact the Conference had on them.
Family Conference is a collection of stories of hope- we would love to see you there!
You Inspire Me: Cue the Happy Tears!
Let’s look back at joyous moments of 2024 brought to us by talented teenagers, a miracle baby, dedicated parents, a dad-daughter cycling team and others. From a clinical trial to personal milestones, their stories inspire and capture the heart of the NFED.
How to Keep the Fa-La-La Around Family This Holiday Season
The holidays can be both joyful and overwhelming, especially when managing the challenges of a rare disorder, like ectodermal dysplasia. Beth Orchard shares heartfelt insights, practical self-care tips, and strategies for thriving during this busy season. Learn how to balance responsibilities, find peace, and embrace the true spirit of the holidays.
Rising to the Challenge: Emily’s Inspiring Journey from Advocate to Civics Bee Champion
Dad’s daily civics quizzes transformed a young girl’s mornings into learning adventures, ultimately leading to a national championship and a life-changing scholarship. This inspiring story of a young girl’s dedication and achievement will leave you amazed.
Prevalence Rates: How Many People are Affected by Ectodermal Dysplasias?
People often ask, “How many individuals are affected by ectodermal dysplasias?” It’s a challenging question to answer, since they are rare conditions. A team of NFED researchers now has an answer. Read to learn just how prevalent ectodermal dysplasias are and why these numbers are important.
Our 24th Halloween Bash is a Spooktacular Success!
We are thrilled to share that our Halloween Bash 2024 was another huge success, raising significant funds to support the NFED mission!
Magic Moments, Stories of Resilience at the NFED
Magic moments happen all the time at the NFED! Marianne from the Board recalls adopting her son, Peter, from China. Affected by Clouston syndrome, Peter attended his first NFED Family Conference as a teen. Find out how it changed him. Plus, read about other Board members’ magic moments.