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.
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 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.
Many mothers desire to breastfeed their baby. But, for women affected by hypohidrotic ectodermal dysplasias, they may not be successful. Findings from a research study explain why the condition can impact your ability to breastfeed. Several women share their own personal experiences.
Find out what the National Foundation for Ectodermal Dysplasias recently published in research, will be announcing about the Ensuring Lasting Smiles Act and is planning for 2019.
Meet the newest member of the National Foundation for Ectodermal Dysplasias staff. Becky Abbott will help us serve families affected be ectodermal dysplasias by managing the treatment and research programs. Learn why our mission is personal for this rare disease advocate.
Sheltered as a child because of ectodermal dysplasia, Beth Orchard is raising her kids differently. This advocate is giving her children the same opportunities as kids who can sweat and eat normally. She’s taking bold steps to make a difference and wants you to join her.
Researchers identified a way to diagnose x-linked hypohidrotic ectodermal dysplasia noninvasively. Learn how and why it’s imporant for a new potential treatment.