We want to thank you.

In recent years, there has been a growing trend to create a “Gratitude Jar” as a visual reminder of the wonderful things in our lives. Every day (or as often as possible), you put in a note about something that happened that day that gives you gratitude and thanks.  At the end of the year,…

Children Don’t Need Teeth?

Kevin Koser doesn’t think he should have to explain to his son with ectodermal dysplasia that he can’t have teeth because health insurance companies don’t feel teeth are necessary. So, he’s taking action and getting others to join him in advocating for the Ensuring Lasting Smiles Act.

A Whirlwind

Volunteers helped us run every aspect of the 2018 National Foundation for Ectodermal Dysplasias Family Conference in Portland, Ore.

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.

I’ve Often Felt Odd

Aubrey Vora has spent her lifetime attending NFED Family Conferences. In her family’s journey with ectodermal dysplasia, she learns about the many ways to be human, being a member of the tribe and how you can impact someone’s life simply by showing up.

We Celebrate Service.

April is Volunteer Appreciation Month. A time to recognize, thank and celebrate volunteers. We respect and love our Volunteers yearlong but this is your special month to cheer you on for all you have done and do for those affected by ectodermal dysplasias and the NFED. We celebrate your service. It has become even clearer…

It Felt So Powerful

Beth Tascione and Jonathan Weil didn’t think about it too much when their one-year-old daughter’s tooth came in pointy shape. But when the second one did, too, they got curious. Their online investigation led them on a journey to learn about ectodermal dysplasia, advocate for their daughter and raise funds for the organization that helped them every step of the way, the National Foundation for Ectodermal Dysplasias.