We are thrilled to announce that Greg Klimovitz has joined the National Foundation for Ectodermal Dysplasias (NFED) as our new Director of Development and Communications. With 20 years of experience in community development and executive leadership within nonprofit, interfaith and religious organizations, social enterprises, and youth programs, Greg brings a wealth of knowledge and a fresh perspective to our team.
XLHED Clinical Trial Opens New Site in Los Angeles
Women who are exploring prenatal treatment for their son affected by x-linked hypohidrotic ectodermal dysplasia (XLHED) now have an additional site to consider. The Edelife Clinical Trial has added a site at Cedars-Sinai Medical Center in Los Angeles (LA), California.
Researcher Spotlight: Shirley Parraga
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.
The Stand Together Advocacy Conference Was Awesome
Our Stand Together Advocacy Conference was a whirlwind of excitement and unity! We welcomed not only our families but also care providers and members of other organizations. Our goal was to empower them to advocate for themselves and on Capitol Hill. Watch the highlight reel and read about our great success and new friends made!
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.
Our Impact Report – 2023
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!
From Fragile to Thriving: The First 15 Years of Living with AEC Syndrome
Joshua has endured 51 surgeries, life-threatening skin infections, overheating challenges and ever weeping eyes. His mom looks back on his childhood and journals about the medical issues Joshua faced and how they treated them. Read how this teenager is embracing life as an adventure and educating others about having AEC syndrome.