The NFED Family Rises Up for Rare

It’s Ectodermal Dysplasia Awareness Month, and we’re sharing a few stories of hope that have stuck with us. Revisit stories from those who’ve risen above the diagnosis to help and inspire others.

No Human is Limited!

Markus Kappen can’t sweat but hasn’t let that stop him from competing in triathlons. He says that you don’t choose your passion. Passion chooses you without you even noticing. In this inspirational story, he shares what he’s learned, the obstacles he overcame and what his next passion looks like.

It’s In Your Hands

Lynne Thomas knew that ectodermal dysplasia affected hair, teeth and sweat glands. But a series of life experiences raised questions about her grip and fingerprints. Learn more about these unique syndromes.

First In Our Family

Possible ectodermal dysplasia. Genetic. Life-long battle. These are not the words a parent wants to hear about their sweet little girl. But, Ashley Braden heard them and she cried. Then she reached out to the NFED for help.

Missing Fingers Bonds Three Amigos

Having missing fingers can get you bullied. It can also help you find life-long friends. Read about Tyler, Zemery and Nollan’s special friendship and how going to the NFED Family Conference impacted them.

Our Special Grandson

Donna Garrett-Miller details how her grandson, Noah, was born with complications that led to an Ankyloblepharon-Ectodermal Defects-Clefting (AEC) syndrome diagnosis.

Be Cool to Oneself

Cyprian Katongo encourages others affected by ectodermal dysplasia to be who they are and not give in to the bullies who may diss them. Whether you live in Africa, the United States or somewhere else, he has a message of hope for you.

Keep on Trucking

At 45, Erica Merriweather has spent a lifetime being treating differently, even bullied, because her teeth are different due to ectodermal dysplasia. Now, she’s fighting to get treatment.