What began as one mother’s determination to raise awareness for her son’s rare condition has now grown into a beloved community event. This year marks the final Sweat It Out 5K fundraiser for the NFED, and we’re celebrating Jamie and her family’s dedication to raising awareness for their son, Nicholas, who was born with XLHED.
2024 Impact Report: Together We Did More
See the incredible impact you helped make in 2024! From growing global connections to life-changing smiles and advocacy wins, our latest blog highlights the 2024 Impact Report. Don’t miss this inspiring look back!
Volunteer Finds Way to Connect Patients with Caring Dentists
Meet Dr. Beau Meyer, a passionate pediatric dentist making a real difference for kids with ectodermal dysplasias! His dedication, creativity, and heart for his patients shine through in everything he does. Want to hear how he’s changing lives—and maybe even get inspired yourself? Don’t miss this volunteer spotlight!
Dermatologist Volunteers and Creates New Resources for Ectodermal Dysplasias
Long time National Foundation for Ectodermal Dysplasias (NFED) volunteer and pediatric dermatologist Dr. Elaine Siegfried said that mentoring the next generation of doctors about the ectodermal dysplasias is one of her passions. This month, we feature one of those new doctors in our volunteer spotlight. Dr. Rylee Moody graduated from medical school at Saint Louis…
NFED Recruiting TP63 Research Project Subjects
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.
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.
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 Impact of Volunteers on the NFED
It’s Volunteer Appreciation Week and we have a lot of people to celebrate and thank. Our committed volunteers span the globe and lend their time, skills, and passion to make a real difference.