Bringing people together is what the National Foundation for Ectodermal Dysplasias does best—especially when advancing research. This is more than science; it’s about saving lives. Read what happened at our recent Complex Wound Healing Conference in Philadelphia.
Leading the World in Research for Ectodermal Dysplasias
The NFED is pioneering innovative research on several fronts to find answers to some of our many unanswered questions. Learn about efforts to establish prevalence rates, to develop treatment protocols for wound healing in the p63 syndromes, to establish best practices for eye treatment protocols for incontinentia pigmenti and more.
The Smile That Means The Most to Me
Jayden Clark’s skin as a baby was so fragile at one point it caused a life threatening infection. Even small brushes of his skin could cause it to breakdown. Now 19, Jayden is a thrill seeker! Learn more about his extensive medical journey, his passions and the special message he has for others with ectodermal dysplasias who find it hard to smile.
World Experts Collaborate to Advance Ectodermal Dysplasias Research
For four days in October, 80 experts from around the world came together to chart a course for the future of ectodermal dysplasias and rare disease research. The ultimate goal was: “Translating Discovery to Therapy”. Find out how the International Ectodermal Dysplasias Research Conference will impact diagnosis and therapy development.
Blessed On A Sunny Day
Lily’s symptoms turned Alexus Abney and her fiancé’s lives upside down. However, this sweet baby has been a blessing to their lives in many different ways.
Four Key Takeaways from NFED’s 2017 Annual Impact Report
As a nonprofit organization serving the ectodermal dysplasias community committed to transparency, we are happy to share with you our 2017 Annual IMPACT Report. Here we report on just a few of the many activities and accomplishments from 2017.
Ectodermal Dysplasia Treatment Videos Now Available
The one thing all our families want is information about ectodermal dysplasia treatment. You want to know what to expect for you or your child. You are seeking treatment options. You are looking for answers. That’s where the National Foundation for Ectodermal Dysplasias comes in. We now have six free videos of educational workshops from our 2017 Family Conference available to watch. You can hear from our experts, see their presentations and learn.