My Motto: Never Ever Give Up

Meet Nicole, a determined 14-year-old girl who is using her voice on Capitol Hill to advocate for herself and others. She would like you to join her. Learn why she’s advocating and what you can do to help.

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.

What does a smile mean to you?

For Rachel Nicksich, attending the NFED Kays’ Kids Camp was the best experience of her life. It inspired her to become an NFED Smile Maker and give monthly, despite her limited income.

A Cause Worth Fighting For!

Jeanne Wang wanted to give back to the organization that helped her when her son was diagnosed with a rare syndrome called EEC. She quickly found that education and raising awareness empowered her!

Make time to visit with your NFED family

By Meredith Grimes Our first  National Foundation for Ectodermal Dysplasias (NFED) Family Conference was a life-changing week.  We were new to the diagnosis and feeling completely overwhelmed. We had a list of questions a mile long. What is hypohidrotic ectodermal dysplasia (HED), what does it mean to be a carrier, what do we need to…