Diagnosing Ectodermal Dysplasia Syndromes in Babies

When it comes to understanding and diagnosing ectodermal dysplasia syndromes in children, parents play a crucial role. These genetic disorders affect 1 in 10,000 births. Some symptoms can be identified during pregnancy or at birth (especially if there is a family history), many only become noticeable during later stages of growth and development, like when…

A Leap of Faith to Open Ourselves

By Nancy Nelsen, Guest Blogger We attended the National Foundation for Ectodermal Dysplasias (NFED) Family Conference during the summer of 2015 in Colorado Springs.  Neither of us, my husband, Karl and I, were prepared for the emotions that filled us as we listened to other families’ stories, and told our own. We felt supported, connected…

An Anniversary Gift for You

As you know, in 2016 the National Foundation for Ectodermal Dysplasias (NFED) community is celebrating our 35 anniversary!   This year, we celebrate 35 years of NFED success.  Over the years we have added tremendously to the body of knowledge of ectodermal dysplasias, made great strides in treatment and have had tremendous research successes. Thirty-five years…

Success: The Best Kind of Revenge

by Patrick Brenner High school is rough. With pressure from your peers to fit in, with pressure from your parents to behave, with pressure from the school to study hard, it’s a miracle any of us made it out alive. Some of us had an exceptionally difficult experience. I consider myself one of those. Back…

Volunteer Spotlight: Our Website Committee

Building an all-new NFED.org is a major undertaking! Luckily, we have five volunteers who are advising us at every step of the way. The research phase of the project began in June of 2015. We are excited about how the site is developing. The big reveal will be in November. For their hard work and…