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!
XLHED Research Success: The Power of Family Participation
Discover the incredible journey of XLHED research, where dedicated families and tireless efforts have led to life-changing breakthroughs. This inspiring story highlights how your participation can help shape the future of XLHED treatments. Don’t miss it!
New Board and Council Members Bring Expertise and Insights to the NFED
The National Foundation for Ectodermal Dysplasias (NFED) is thrilled to announce the addition of new leadership experts. Joining our Board of Directors, Patient Care Council, and Scientific Advisory Council, these four exceptional leaders will bring knowledge, experience and insights to advance the foundation’s mission of supporting and serving individuals and families affected by ectodermal dysplasias.
Research Conference Aims to Find Answers for Incontinentia Pigmenti
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.