Baby Oakley had a hard time feeding. Watching your baby not be able to swallow can be terrifying. He had projectile vomiting and wasn’t gaining weight. His parents begged doctors to help their baby boy. A hospital stay and many tests later, they figured it out. This information coupled with a trip to the dentist led to a diagnosis of ectodermal dysplasias. Find out how Oakley is feeding now.
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.
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.