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.

Two Partners Re-Launch XLHED Research Study

Research the National Foundation for Ectodermal Dysplasias has nurtured for three decades is advancing to a clinical trial. EspeRare has partnered with Dermelix Biotherapeutics to develop DMX-101 as an in-utero protein replacement therapy for the treatment of x-linked hypohidrotic ectodermal dysplasia (XLHED). If approved, the treatment has the potential to be the very first in utero administered drug to correct a genetic condition before birth!

What’s going on at the NFED?

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.

Becky Abbott Joins NFED Staff

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.

My Son Has Only Six Teeth

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.

Update on the XLHED Natural History Study

The NFED granted funding to Dr. Holm Schneider to help him finish the XLHED Natural History Study. Learn why this data is critical for the prenatal trial.