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.
Know the Signs of Ectodermal Dysplasias
Do you know the ways ectodermal dysplasia can affect the body? Watch our video to know the signs. People are going undiagnosed which can be frustrating and stressful. Helps us spread the word for Ectodermal Dysplasias Awareness Month.
Ectodermal Dysplasias Awareness Month 2019
Join others affected by ectodermal dysplasias worldwide to unite for Ectodermal Dysplasias Awareness Month in February. Help us raise awareness of these rare conditions. Our campaign is focused on awareness of the symptoms, its impact on teeth and the need for a law in the United States to get coverage for treatment.
One of Our Smile Makers
At the National Foundation for Ectodermal Dysplasias (NFED), one thing is for sure, we love our families! When we support our families, we certainly appreciate when they support us back. One of the most loyal and sustaining ways to support the NFED is through our monthly giving program, the Smile Makers. One of our amazing…
Volunteering Is Who I Am
Volunteering for Dr. Kathleen Motil is as natural as sunrises. Learn how she’s spent 20+ years helping families with ectodermal dysplasias learn about nutrition as a volunteer for the National Foundation for Ectodermal Dysplasias.
We Should Love Our Lives
Cyprian Katongo grew up in Zambia being bullied and dissed for having hypohidrotic ectodermal dysplasia. He endured the pain and asked God, “Why do I have this condition?” Find out not only how he endured but how he has triumphed and is sharing a message of love and hope.
Hazel Glows With Her New Teeth
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.
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.