The NFED has a new mission statement, and it’s all about you. This blog breaks down what’s changed, why it matters, and how it makes our community stronger. Whether you’re living with ectodermal dysplasia or supporting someone who is, this update is all about you—and the brighter future we’re building together. Come take a look!
How You Can Help ReIntroduce ELSA in Congress
Co-chairs of the National Foundation for Ectodermal Dysplasias (NFED) Family Advocacy Committee give an update on the reintroduction of the Ensuring Lasting Smiles Act (ELSA) in Congress.
How Matthew Can Help Change the Future of XLHED
Curious how a baby can help change the future of a rare genetic condition? Read how Beth and Peter joined a groundbreaking clinical trial while Beth was still pregnant, giving their son, Matthew, early treatment for XLHED. It’s an emotional, uplifting story about science, family, and hope for generations to come.
Celebrating Before and After Smiles
Behind every bright smile is a journey of courage, resilience, and transformation. Discover the powerful stories of individuals with ectodermal dysplasia who overcame obstacles to achieve healthy, functional teeth and see their before and after photos. Let their experiences inspire your own path to oral health—and explore the resources that can help you every step of the way.
March Madness: Playing College Basketball When You Can’t Sweat
It’s March Madness! Think playing college basketball is tough? Try doing it without sweat glands! Jacobi doesn’t just play—he’s excelling, despite having XLHED. From figuring out how to regulate his body temperature to throwing down jaw-dropping dunks, his journey is nothing short of inspiring. Learn what he has to say to the next generation of athletes with XLHED.
George’s Smile Maker Story: Why Ongoing Support Matters
Our donors are more than just contributors at the National Foundation for Ectodermal Dysplasias (NFED). Among these dedicated supporters, our Smile Makers stand out. Hear why George, a long-time supporter, monthly donor, and former NFED Board member, continues to give monthly and what inspires his ongoing commitment to the NFED.
We’re Hiring: Programs and Community Engagement Coordinator
Are you passionate about making a difference in the rare disease community? The National Foundation for Ectodermal Dysplasias (NFED) is looking for a Programs and Community Engagement Coordinator to join our team! As a Programs and Community Engagement Coordinator, you’ll play a key role in ensuring the smooth execution of our programs. From coordinating events…
How Crowns Boosted A Five-Year-Old’s Confidence
Brooklynn’s journey with ectodermal dysplasia led to a life-changing smile transformation. Read how her new crowns boosted her confidence and function, and how her parents navigated challenges to give her the best care possible. This inspiring story is one of resilience, advocacy, and the power of a radiant smile.