The Value Of One. The Power of Many Voices.

It’s Volunteer Appreciation Week! We celebrate the incredible people who stepped up during a pandemic and helped us advance our mission. Learn what that looked like, what we are planning next, and how you can add your voice!

Cyprian – A Voice in Action in Africa

They dissed him. Called him names. Made fun of his appearance. Their voices rang in his ears every day. Voices filled with ridicule and hate. And for what reason? Simply because he was affected by a rare disorder. One day, Cyprian Katongo chose to listen to different voices. His life of suffering took a new direction….one he defines as H.E.D.

Sharing Mighty Ronan’s Story Makes All the Difference

Lindsay Claire is the type of mom who would climb a mountain if it meant helping her son, Ronan, who is affected by EEC syndrome. And climb a mountain height she did – all in an effort to raise money for the NFED. She shares their creative approaches and the key to their fundraising success.

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.