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.
An Effective Treatment For EEC-related Limbal Stem Cell Deficiency
If you or a loved one are affected by EEC syndrome, understanding its impact on vision is crucial. This blog shares one individual’s journey with limbal stem cell deficiency, the challenges of treatment, and a procedure that is helping his sight. Discover valuable insights, hope and the latest advancements.
Conference Advances Research and Treatment for Incontinentia Pigmenti
At the NFED, we recognize the urgent need for more research on rare conditions like incontinentia pigmenti (IP), which has received limited focus in the scientific community. We collaborated with Oregon Health Sciences University to host the NFED Incontinentia Pigmenti Conference: Translating Discovery to Therapy, which brought together researchers, doctors, and families to advance IP care.
We Support Vital Research: A Statement on Rare Disease Day
On this last day of February, the rarest of days on the calendar, the NFED celebrates International Rare Disease Day. We acknowledge that we cannot do this work alone.