Your five-year-old daughter wearing her first dentures can be surreal. Just ask Sarah Hamilton. The mom shares about how the teeth have impacted Hazel’s eating and speech and how they are having to battle their insurance to get benefits.
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.
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.
Researchers identified a way to diagnose x-linked hypohidrotic ectodermal dysplasia noninvasively. Learn how and why it’s imporant for a new potential treatment.
Corporate executives Krista Basile and Richard Stratz join the National Foundation for Ectodermal Dysplasias Board of Directors.
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 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.
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.