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?
Vulvar Skin Care for Ectodermal Dysplasias
Women affected by ectodermal dysplasias can experience symptoms that are specific to being female and can be sensitive to talk about. We have a new library resource that these women will find useful for vulvar and vaginal care.
This is Us
We are your NFED team! We’re a mighty crew of six women. We couldn’t be more different. And that’s a good thing! But we are the same in one way. The most important way. The six of us are passionate about families affected by ectodermal dysplasia and doing what we can to help you. Since we typically get to learn about you, we thought it was our time to share. This is us.
Tales of the Fire Breathing Dragon
Christine Gottschalk found it heard to hear that her perfect son had ectodermal dysplasia. Worse was learning insurance wouldn’t pay for his care. It made no sense to her that some day, her son may have to choose between paying for his dental care or paying for a college education. She decided to take action and invites others to advocate with her.