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.

How I Diagnosed Myself With a Rare Disorder

Erica Green is a young woman who spent her life without a name or explanation as to why her teeth were missing and different. Because she presented “normally,” no doctor or dentist ever had answers or a name. Then, she broke her denture and sent her on a journey to self-diagnosis.

What’s Emotion Got To Do With It?

Kaitlyn Squibb knew all the ways that x-linked hypohidrotic ectodermal dysplasia affected her body. But, she’s finding strength as she learns how it impacts her emotions, too.

The Amazing Power of Hope

Olivia Daniels has faced many challenges in her 22 years. She learned to channel her feelings and experiences into acts of service and kindness. She’s an amazing creative force for good! Find out how this pageant champion is using her platform to raise awareness of ectodermal dysplasias and serve others.

Seeing Myself as Beautiful

Nicole Fitzgerald spent many years not feeling like a woman because of how ectodermal dysplasia affected her hair, teeth, skin and breasts. She found her path to feeling beautiful and wants to share that with other women.

My Son With Incontinentia Pigmenti

Boys affected by incontinentia pigmenti typically do not survive pregnancy. The condition is an X-linked dominant “lethal” condition. Meet Jamistyn, a 6-year-old boy with IP who not only survived but is thriving! Read more about his extremely rare story!