At the National Foundation for Ectodermal Dysplasias (NFED), we understand the pressing need for research into rare disorders like incontinentia pigmenti (IP). This complex form of ectodermal dysplasia has garnered little attention in the research community, and we’re committed to changing that with the Incontinentia Pigmenti Conference: Translating Discovery to Therapy.
The NFED is Growing!
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!
New Congress, New Opportunities: How You Can Help Pass the Ensuring Lasting Smiles Act
The new 119th United States Congress began on January 3. What does this mean for the Ensuring Lasting Smiles Act (ELSA)? Find out what has shifted, how we’re moving forward and what you can do to help us get this important legislation passed.
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.