Growing Up with the NFED: Meet Virginia

Virginia Higgins was just five years old when her mom, Fredia Shimchick, heard about a mom in the area who was looking for other families affected ectodermal dysplasias. Their family would be one of the first 12 families who called NFED their ectodermal dysplasia home. Find out about her love for the NFED family and why she gives back.

Thank You, Jodi, Editing Queen of the NFED

Jodi Edgar Reinhardt has dedicated 25+ years to the ectodermal dysplasias community as a staffer at the National Foundation for Ectodermal Dysplasias.

My Life as Nurse, Mom and Advocate

In all her years as a PICU nurse, Amy Leverenz had never heard of ectodermal dysplasia until the day her daughter was diagnosed with the rare condition. She found the National Foundation for Ectodermal Dysplasias, educated her self and is now educating physicians and legislators. She’s on a mission to impact the lives of other families like hers for the better.

Doing Everything I Can for Ectodermal Dysplasias

By Debbie Fenoglio I was pregnant with my second son, Benjamin, in the late summer of 2011 when it was first suggested that my oldest son, Jackson, had ectodermal dysplasia. Like many before me, I had not heard of ectodermal dysplasia. It was offered by our dentist as Jackson’s teeth were not erupting and he…

5 Reasons Why We Need You on Capitol Hill

Ectodermal Dysplasias Advocacy Day approaches quickly and we need you, our National Foundation for Ectodermal Dysplasias (NFED) family, to be there. We try time and again to be advocates to all members of the NFED. But only you and your family are the ones who can make a difference in the lives of people affected…

NFED.Org Gets Extreme Makeover

By Mare Fete, Executive Director Great news! Our online home at www.NFED.org has had an extreme makeover. We have launched an entirely new website to better serve our ectodermal dysplasias community. It’s our gift to our families, donors, volunteers and care providers in celebration of our 35th anniversary. Families complained about the old site, how…

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…