Ectodermal dysplasia runs in Kylie Reeder’s family. After she married, her in-laws learned that the daughter they are adopting may also share the condition.
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…
Genetic Counseling Helps Make Sense of Ectodermal Dysplasia
If you or your loved one recently received an ectodermal dysplasia diagnosis, you may have more questions than answers at first. How did this happen? Can our future children have it? Should I have other family members tested? All of your questions are valid ones and normal to have following a diagnosis. The specialist best…
We Volunteer So Others Don’t Feel Lost
by James Kluzek We were asked why we volunteer for the NFED. It all started November 16, 2000 when our daughter, Christina, was born with a genetic disorder called Goltz syndrome. This day changed our lives forever. We had never heard of this syndrome and more importantly most of our doctors knew nothing about it either….
We Are Flying High!
We just wrapped another life-changing, heartwarming, spirit-lifting Family Conference in St. Louis! What an amazing conference from start to finish. The conference started off with Jack Kriz riding his bike in from Kansas City. He rode 288 miles of bike riding in the awful heat. What dedication to do this ride to raise money for the…
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…