The Dickie Family’s Full Circle Moments with Ectodermal Dysplasia

John Dickie IV was a young adult when he attended his first NFED Family Conference in 1987. His eyes were opened when he saw older guys affected by ectodermal dysplasia who had families and careers. Their lasting impression made him and his family want to give back to the NFED family, too. Read about the Dickies’ ectodermal dysplasia journey, their love for the NFED, John’s adventures and the advice he has for parents.

Let’s Celebrate 40 Years of NFED Success!

The National Foundation for Ectodermal Dysplasias (NFED) turned 40 years old on December 24, 2021. Normally, we would have recognized this milestone throughout last year. But, the pandemic caused us to shift our plans. Find out what we all have planned for this celebration year!

Growing Up with the NFED: Meet Virginia

Virginia Higgins was just five years old when her mom, Fredia Shimchick, heard about a mom in the area who was looking for other families affected ectodermal dysplasias. Their family would be one of the first 12 families who called NFED their ectodermal dysplasia home. Find out about her love for the NFED family and why she gives back.

This Will Change You in the Best Way

The Fenoglio / Fodor family is showing their son Jackson how proud they are of him by volunteering. They believe in supporting your family. And for them, the NFED is family.

Meet Your Kids Camp Director!

Aubrey is a creative who is leading our At Home Edition of Kays’ Kids Camp and Teens Program. As a life-long member of the NFED family, she knows first-hand how important it is for kids with ectodermal dysplasia to connect and have fun.

You are Strong!

As the challenging times continue, we know a few things are certain. You are strong. Together, we are stronger. Find about the exciting projects we are launching this summer to bring us together.

Family Conference Canceled Due to Coronavirus

To protect the health and safety of families affected by ectodermal dysplasias, the NFED has canceled our 2020 Family Conference in Washington D.C.

Big Plans for 2020

The NFED has new things in store for the ectodermal dysplasias community in 2020. Find out what we have planned and how you can be a part of it.