Update on the XLHED Natural History Study

The NFED granted funding to Dr. Holm Schneider to help him finish the XLHED Natural History Study. Learn why this data is critical for the prenatal trial.

One More

A teenager with ectodermal dysplasias talks about what drives him to go “one more.” Learn what he’s surprised to say about the disorder that affects him.

Advocating for ELSA on Capitol Hill

Families from across the U.S. met with members of Congress on July 18 for the 2nd National Foundation for Ectodermal Dysplasias Advocacy Day on Capitol Hill. They educated about ectodermal dysplasias and the need for the Ensuring Lasting Smiles Act (ELSA).

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…

I Am

A teenager affected by ectodermal dysplasia speaks from the heart in this poignant poem. Can you relate?