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.
First Dentures for Hazel: Her Mom’s Perspective
Watching your baby girl – who is only 5 – get fitted for her first pair of dentures can be an emotional journey. Read how Sarah Hamilton is navigating the process and find out what she’s learned about her daughter, herself and ectodermal dysplasia.
Ultrasound-Based Diagnosis of X-Linked Hypohidrotic Ectodermal Dysplasia In Mid-Pregnancy
Researchers identified a way to diagnose x-linked hypohidrotic ectodermal dysplasia noninvasively. Learn how and why it’s imporant for a new potential treatment.
Basile and Stratz Join Board of Directors
Corporate executives Krista Basile and Richard Stratz join the National Foundation for Ectodermal Dysplasias Board of Directors.
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.
Jacob Moss Photo Project Call To Action
Jacob Moss is looking for individuals with ectodermal dysplasia, ages 15-50, to participate in his photo project for his graduate thesis. His goal is to capture the diverse mix of people who happen to be affected by the various types of ectodermal dysplasia.
Hypohidrosis and How to Chill Out in the Car
Does hypohidrosis make you want to stay inside? Learn what to do to keep loved ones who can’t sweat cool this summer while they are riding in the back seat of a car.
Giraffes to Genes: Alexander’s Story
Alex’s story started out just like any other story. The perfect little baby who fed well, was always normal on the growth charts and in general was a happy baby! We were also happy that he had the perfect little shaped head to be bald. You see, we did not know at the time that his extended baldness had anything to do with a rare genetic disorder, so we always joked it was a good thing his little baby head was shaped so perfectly.