Mental wellness sounds like a catchphrase because we hear about it more often in the news and in our social feeds. We may even discuss it with the people around us, but really, mental wellness is about how we take care of the mass of synapses, memories, and experiences in our heads, and that can carry a lot of weight sometimes. Living with, caretaking for, and supporting loved ones with a rare condition like ectodermal dysplasia can be a challenge. Learn about a new resource to help you with your mental wellness.
Volunteer Jordan: A Voice for Ectodermal Dysplasias
Jordan Kahn, a passionate advocate for the NFED, shares his inspiring story of supporting his daughters with hypohidrotic ectodermal dysplasia (HED). As a state lead for Maryland, he’s dedicated countless hours to raising awareness and advocating for legislation that impacts those with ectodermal dysplasias. Discover why Jordan is so committed to the NFED and how you can join him in making a difference.
Cholesteatoma Risk in AEC, EEC, and Goltz Syndrome
Learn more about the risks and recommendations related to cholesteatoma for individuals with AEC, EEC, and Goltz Syndrome through a recent study published in the International Journal of Pediatric Otorhinolaryngology.
Welcome Greg Klimovitz, New Director of Development and Communications
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.