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!
How You Can Help ReIntroduce ELSA in Congress
Co-chairs of the National Foundation for Ectodermal Dysplasias (NFED) Family Advocacy Committee give an update on the reintroduction of the Ensuring Lasting Smiles Act (ELSA) in Congress.
Celebrating Before and After Smiles
Behind every bright smile is a journey of courage, resilience, and transformation. Discover the powerful stories of individuals with ectodermal dysplasia who overcame obstacles to achieve healthy, functional teeth and see their before and after photos. Let their experiences inspire your own path to oral health—and explore the resources that can help you every step of the way.
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.
Get Ready for Ectodermal Dysplasias Awareness Month
February is Ectodermal Dysplasias Awareness Month. Learn more about what the NFED is doing to raise awareness and how you can join the fun!
All Things Family Conference
On February 15, I had the pleasure of joining some new and returning families on a webinar to answer all of their questions about the NFED Family Conference, which will take place July 14 – 16. If you weren’t able to join us at the webinar, I want to share some of the great questions…
Fever and Ectodermal Dysplasias
By Tim Fete, M.D., M.P.H. and Clayton Butcher, M.D. Fever and ectodermal dysplasia can be tricky for parents. Your child is running a temperature and acting a little lethargic. Is he getting sick? Or, is he overheated because he doesn’t sweat correctly? Should you treat the fever? Should you call your doctor? All of these…
Celebrate Our Successes With ELSA
As we enter 2021, you may be wondering what the status of the Ensuring Lasting Smiles Act is. Find out what progress we made and how you can sign up for our Virtual Advocacy Day in April.