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.

Don’t Forget To Take Care of Yourself

There are many emotions that we are all experiencing throughout these days of uncertainty. It’s highly likely that each of us will travel through the stages of grief. Some days, the stress can feel so heavy. It’s important to recognize and accept that this is OKAY! While our situations and personal experiences may be different, we’re all learning how to accept and cope with the changes in our lives as a result of COVID-19