We understand that wound healing presents a significant challenge for individuals with TP63 syndromes. This is why we are thrilled to share that the National Foundation for Ectodermal Dysplasias (NFED) will host a wound healing conference in just a few weeks, November 3-5. The collaborative Complex Wounds in Ectodermal Dysplasias Conference will occur at the…
The National Foundation for Ectodermal Dysplasias (NFED) and researchers at East Carolina University (Dr. Maranke Koster & Shirley Parraga) are recruiting research subjects to participate in a new collaborative research project.
Meet Shirley Parraga of the Wake Forest School of Medicine, Department of Dermatology and research assistant to Dr. Maranke Koster. Shirley’s journey with the National Foundation for Ectodermal Dysplasias (NFED) exemplifies a deep commitment to advancing research and providing hope for families affected by rare skin diseases.
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.
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.
Learn how the NFED’s unwavering passion translated into concrete action for our ectodermal dysplasias community. Look back on the expanded support, research advances, and advocacy efforts that shaped 2023. Together, we achieved great things!
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!
What are you doing on Tuesday, November 28? It’s Almost #GivingNFEDTuesday! Are you going shopping on Black Friday? Or Small Business Saturday? Or Cyber Monday? Will you celebrate with us? While you’re searching for the perfect gifts, we invite you to give the gift of making a difference and help us reach new heights in…