What an Inspiration…

Meet Meg. She’s a high school student from Mequon, Wisc. who decided to hold a fundraiser in honor of her sister, Meredith. Meredith has a rare disorder called hypohidrotic ectodermal dysplasia or HED, which results in multiple missing teeth, sparse hair and a reduced ability to sweat. Meg enlisted her friend to help. Since Meg…

BE HEARD. INSPIRE OTHERS. BE YOURSELF.

Wow! Can you believe it is February already?  We all know what happens in February – Valentine’s Day, Ground Hog Day, the Super Bowl. But more importantly, it is Ectodermal Dysplasias Awareness Month, #EDAM2016.  This month, we are striving to raise the positive awareness of this condition which affects an estimated 2 in 10,000 births….

Treating Common Nasal Problems in Ectodermal Dyspalsias

The following is an excerpt from the NFED’s “A Guide to the Eyes, Ears, Nose and Throat in the Ectodermal Dysplasias.” The common nasal problems of ectodermal dysplasias revolve around the management of nasal dryness and are usually managed without surgery. Surgery may be may be of some benefit if there is an associated internal deformity…

Breast Implants

Editor’s note: Lack of breast development is common in certain syndromes of ectodermal dysplasia. We wanted to share a few stories of affected women who experienced lack of breast growth either in one or both breasts. Two of the women interviewed chose to get breast implants, while the other did not. Names and identifying details have…

Two Questions… How will you answer?

By Mario Adamo from Zurich, Switzerland Family Conference Volunteer in  Columbus, Ohio Do you remember the movie “The Bucket List”? There were those two individuals, both condemned by cancer, sitting above a pyramid, talking about ancient beliefs. For every soul knocking on paradise’s door, the Gods held two questions: “Did you find joy in your…