2019 Annual Impact Report

Since 1981, our mission has focused on families affected by ectodermal dysplasias. We are proud of the extraordinary accomplishments we have achieved in our nearly four decades. 2019 was no exception. Read to see the impact we made for our NFED family.

What’s going on at the NFED?

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.

Our Baby Rocker and King of Spreadsheets

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.

Our Family’s Life-Changing Day

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.

Children Don’t Need Teeth?

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.

A Whirlwind

Volunteers helped us run every aspect of the 2018 National Foundation for Ectodermal Dysplasias Family Conference in Portland, Ore.

Bridges to Inspiration

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…

Where will we be?

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…