Wonderfully Rare

Kelly and Eric Koch became first-time parents when they welcomed a beautiful healthy girl named Clara. When sweet Clara’s baby teeth erupted and were shaped differently, the Kochs started on a long and humbling journey to understand why. The answer is a diagnosis that is one of the rare of the rare. Kelly bares her heart as she shares her journey as a new mom.

Blessed On A Sunny Day

Lily’s symptoms turned Alexus Abney and her fiancé’s lives upside down. However, this sweet baby has been a blessing to their lives in many different ways.

The Most Beautiful Sight

The Stollers spent the first few years of their daughter, Kambree’s life, trying to figure out what was causing all of her different, possibly unrelated, symptoms. When Kambree was finally diagnosed with ectodermal dysplasia, professionals and genetic testing couldn’t pinpoint which type she might have. Until an NFED Family Conference changed their life. They found something they didn’t realize they were seeking.

Life in a Raindrop

Elizabeth Hoverman has an extraordinary talent for perceiving color and expressing herself through beautiful art. Her photography has won contests and was recently celebrated during Rare Disease Week on Capitol Hill. Affected by EEC syndrome, this artist invites you to look beyond the surface – of her art and her syndrome.

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.