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.
Volunteer Finds Way to Connect Patients with Caring Dentists
Meet Dr. Beau Meyer, a passionate pediatric dentist making a real difference for kids with ectodermal dysplasias! His dedication, creativity, and heart for his patients shine through in everything he does. Want to hear how he’s changing lives—and maybe even get inspired yourself? Don’t miss this volunteer spotlight!
A Great Dental Team Makes All the Difference
Maddie’s journey with ectodermal dysplasia took a transformative turn when she expressed a desire to change her smile. With guidance from the NFED and a dedicated team of specialists, she found a path that preserved her teeth while boosting her confidence. Read her inspiring story of resilience and expert care.
3 Ways to Support Better Mental Health in the New Year
This blog offers a fresh take on building sustainable habits for better mental, physical, and spiritual wellness. Discover tips on mindful social media use, creative ways to stay active, and how to build meaningful connections—especially within the NFED community. Read more now!