We are Determined to Be the VOICES of Change

Together, we are the VOICES of ectodermal dysplasia. We are the many, many faces, races, cultures and ages – and when we bring together all our voices, we can make something remarkable happen! Find out how you can help.

Rise Up and Celebrate Caregivers

Today, we rise up and celebrate all of the caregivers around the world as part of Ectodermal Dysplasias Awareness Month! We pay tribute to everyone who has made someone’s ectodermal dysplasia journey a little easier.

It’s Time to Rise Up for Rare!

You are invited to join us to celebrate our community! It’s Ectodermal Dysplasias Awareness Month and we have lots of fun ways for you to get involved and spread the word.

Celebrate Kelley’s 20th NFED Anniversary!

Helping families with ectodermal dysplasias is her passion! Learn more about this staffer, the lives she’s touched and the many roles she’s played at the Foundation.

HOPE is our Driving Force

In this year filled with so much uncertainty, HOPE provides us with the energy and determination to keep moving forward. Here’s what gives us hope!