As the challenging times continue, we know a few things are certain. You are strong. Together, we are stronger. Find about the exciting projects we are launching this summer to bring us together.
Family Conference Canceled Due to Coronavirus
To protect the health and safety of families affected by ectodermal dysplasias, the NFED has canceled our 2020 Family Conference in Washington D.C.
Big Plans for 2020
The NFED has new things in store for the ectodermal dysplasias community in 2020. Find out what we have planned and how you can be a part of it.
This is a Family Affair
Nikko is a lucky little boy whose family has rallied around him with love and support. Grandpa David and uncle Paul headed off to an NFED Family Conference in search of answers. They found those…and so much more. Find out what they learned and how they are giving back.
Marching On After Diagnosis
Jonathan Weil tells the story of how his family grew in strength and knowledge after his daughter, Maddie’s, diagnosis with ecodermal dysplasias. They’ve come a long way from feeling helpless.
What Happened at the 2019 Family Conference
Chicago proved to be a sweet home for our 38th Annual Family Conference! We welcomed the third largest gathering of families affected by ectodermal dysplasias in history on July 11-13 with 435 people from seven countries attending. It was an extraordinary event filled with new friendships, aha moments, laughter, hugs, and even tears.
Seventy-Five Strong
We thank our hard-working volunteers for the hours they so generously dedicated to the 2019 NFED Family Conference. Without them, this event would not be possible.
Volunteers Needed for Ongoing AEC/EEC Research
Volunteers are needed for ongoing research to design novel therapies for the treatment of skin and cornea lesions that occur in individuals with ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome or ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. The National Foundation for Ectodermal Dysplasias has supported this research led by Maranke Koster, Ph.D. at University of Colorado Denver.