COVID-19 Vaccination and Ectodermal Dysplasias

Should you get the COVID-19 vaccination if you have ectodermal dysplasia? We’ll share with you our thoughts as well as those from the National Organization for Rare Disorders.

2021 Conference From Your Couch

Join us for conference from your couch!  We are excited to share with you the 2021 National Foundation for Ectodermal Dysplasias (NFED) Webinar Series. You won’t want to miss this stellar line-up of speakers and our most asked about topics. Not only will each hour-long webinar provide lots of valuable information but you will be…

Palmoplantar Keratosis in Clouston Syndrome

For people affected by Clouston syndrome, the skin on their palms of their hands and soles of their feet can be thick. We have published a new medical article which explains the condition and the best ways to treat it.

What Does Good Dental Care Look Like?

What does good dental care look like? Dr. Beau Meyer outlines five elements to help you know what to expect as you work with your dentist or dental team.

Treating Hypodontia in Children

Hypodontia is one of the typical symptoms of ectodermal dysplasias. It means that one or more teeth are congenitally missing and may be small. For many affected individuals, it’s common to have just a few teeth. At the National Foundation for Ectodermal Dysplasias, we have always advocated that children – and adults – with ectodermal…

Spend Your Summer With NFED

When we canceled Family Conference because of COVID-19, we brainstormed ways to take key components from this year’s Conference and make them virtual. Even though different communities are opening up in phases, we know that lots of you are staying at home more and looking for ways to connect. Find out how you, your kids and teens can all get your Conference fix this summer – at home!

Don’t Sweat? Here’s What You Need to Know

Keeping your body cool when your sweat glands are missing or don’t work can be a daily challenge. Our new library article explains all about sweat glands and how they work – or don’t. Learn about hypohidrosis, the signs of overheating and ways to stay cool. Families weigh in on what’s working for them.