Meet Lily, a brave seven-year-old who made new friends, colored a stuffed bear, and helped researchers at the NFED’s Wound Healing Conference. Find out how families like hers shaped new treatment guidelines, started a skin sample biobank, and showed what it looks like when science and community join hands.
How Music Helped Ally Blossom with EEC
Ally has never let ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome define her life. Thanks in part to the NFED community, music has helped Ally blossom into an inspiring young woman. She’s now on track to become a music therapist, where she’s sure to help and inspire countless others.
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.
Experiencing the Magic of Ectodermal Dysplasias Research Collaboration
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.
No Fingerprints Can Be An Ectodermal Dysplasia Thing
Do you have a hard time gripping a pen? Can swiping on your phone be frustrating? Is getting fingerprinted impossible? You are not alone. Yes, it’s an ectodermal dysplasia thing. Learn more about adermatoglyphia, its challenges and what you can do to overcome them.
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.
Top 10 Syndromes that Affect NFED Families
Learn which types of ectodermal dysplasia are the most common among NFED families. Update your profile with the type that affects your family. You and your love ones count!
Why I Volunteer
Find out what happened to Jack Kriz when he was 50 years old that finally made him feel whole, and why he always says yes when the NFED asaks for his help.