Trying to understand all the names for all the types of ectodermal dysplasia can feel confusing. This blog breaks it down in a simple way. Learn why your syndrome may have different names, why genetic testing matters, and how knowing your gene or pathway could help with research, treatment options, and better care in the future.
We know there’s a chance that you have never met another person affected by ectodermal dysplasias. We have created a support network of Family Liaisons to provide moral support, information and practical advice, guidance, education, resource information and increase awareness and events for individuals and families. We encourage you to reach out to the Family…
Jalen’s EEC syndrome story is filled with honesty, humor, and heart. She shares how she handled hair loss, bullying, and everyday challenges while building confidence along the way.
Our families have found creative ways to fundraise for the NFED doing things that they love. Find out how they made friends, built community, and raised awareness along the way. Get inspired to have your own small fundraiser and make an impact!
Dr. Clayton Butcher is that rare doctor who specializes in internal medicine and pediatrics. That makes him a great resource for individuals affected by ectodermal dysplasias as they transition from childhood into adulthood. Learn how Family Conference has impacted him as a doctor and in his career.
The NFED continues to invest in research that brings hope to families. Two new $25,000 grants support studies on fragile skin in AEC syndrome and on dental bone health. Learn more about these studies and how they provide hope for better treatments for people with ectodermal dysplasias.
As Mary Fete prepares to retire, she looks back on an amazing journey with the NFED community. From nervous first days to unforgettable Family Conferences, she says she’s been inspired, challenged, and blessed. Join her in celebrating the people, moments, and progress that made her experience unforgettable.
Mary Fete is retiring after years of leading the NFED with heart, courage, and big ideas. She helped grow research, support families and strengthen programs. Read how her hard work and kindness shaped the NFED and why her legacy will guide our community for years to come.