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…
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!
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.
First In Our Family
Possible ectodermal dysplasia. Genetic. Life-long battle. These are not the words a parent wants to hear about their sweet little girl. But, Ashley Braden heard them and she cried. Then she reached out to the NFED for help.
Our Special Grandson
Donna Garrett-Miller details how her grandson, Noah, was born with complications that led to an Ankyloblepharon-Ectodermal Defects-Clefting (AEC) syndrome diagnosis.
Marching On After Diagnosis
Jonathan Weil tells the story of how his family grew in strength and knowledge after his daughter, Maddie’s, diagnosis with ecodermal dysplasias. They’ve come a long way from feeling helpless.
A Wild Yet Silent Thunderstorm
Heather Martin struggled to find answers after her son Isaiah did not fully develop teeth from birth. She was told by multiple dentists that his teeth should be capped, but she did not listen. Follow Heather’s journey as she fianlly finds the answers she was looking for in a diagnosis.