Priscilla and Ryan’s newborn baby struggled to feed in the neonatal intensive care unit. He just wouldn’t take a bottle and the family was frantic for answers as to why. The solution and ultimately an ectodermal dysplasia diagnosis came from their nurse, whose expertise was learned first-hand.
Find out what the National Foundation for Ectodermal Dysplasias recently published in research, will be announcing about the Ensuring Lasting Smiles Act and is planning for 2019.
From rocking babies at the Family Conference to serving as interim executive director, Anil Vora has done it all for the National Foundation for Ectodermal Dysplasias in the last 30 years. We thank him for his unparalleled commitment and Board leadership.
X-rays showed that he would have no teeth at all on the bottom front, and very few elsewhere. How could that be? Read how the Williams family found a diagnosis and a new family.
Kevin Koser doesn’t think he should have to explain to his son with ectodermal dysplasia that he can’t have teeth because health insurance companies don’t feel teeth are necessary. So, he’s taking action and getting others to join him in advocating for the Ensuring Lasting Smiles Act.
Volunteers helped us run every aspect of the 2018 National Foundation for Ectodermal Dysplasias Family Conference in Portland, Ore.
I spent a good part of Sunday walking around Portland, Ore. and reflecting on the 2018 National Foundation for Ectodermal Dysplasias (NFED) Family Conference. People passing me likely thought I was in another world. I was smiling and laughing as I strolled along the river walk. One person stopped me and said, “Wow! You must…
We are so EXCITED to announce where our next three Family Conference will be held! Last year, we were on the East Coast. This year, we went to the West Coast. Our next stop is…