Registration Now Open for 2026 NFED Family Conference! Click Here

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.

How Virtual Advocacy Day Works

Find out how easy it is to participate in a Virtual Advocacy Day! We’ll you through the process of how you can raise your voice and help move the Ensuring Lasting Smiles Act through Congress.

Celebrating Our Superman’s Legacy

Our hearts broke when Dr. Frank Farrington recently passed after a long illness. We recall with much love and gratitude his amazing legacy after 40 years of service to the NFED and our families.

Tim Mickelson Joins NFED Team

We are excited to introduce you to the newest member of our team, Tim Mickleson. He will serve as the Director of Development. “Tim brings 30+ years of experience in the corporate and nonprofit world,” said Mary Fete, executive director of the National Foundation for Ectodermal Dysplasias. “We look forward to him leading our fundraising…

The Most Beautiful Sight

The Stollers spent the first few years of their daughter, Kambree’s life, trying to figure out what was causing all of her different, possibly unrelated, symptoms. When Kambree was finally diagnosed with ectodermal dysplasia, professionals and genetic testing couldn’t pinpoint which type she might have. Until an NFED Family Conference changed their life. They found something they didn’t realize they were seeking.