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!
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.
At the NFED, we hold a special place in our hearts for our volunteers. Donna Garrett-Miller is a proud volunteer who has left her mark on the ectodermal dysplasias community after just one year since her grandson was diagnosed with AEC syndrome.
Growing up isn’t easy, especially if you are a child affected by ectodermal dysplasia.
Lily’s symptoms turned Alexus Abney and her fiancé’s lives upside down. However, this sweet baby has been a blessing to their lives in many different ways.
It’s Ectodermal Dysplasia Awareness Month, and we’re sharing a few stories of hope that have stuck with us. Revisit stories from those who’ve risen above the diagnosis to help and inspire others.
With 100+ different types of ectodermal dysplasias, understanding them all can be overwhelming! Watch this free webinar with pediatrician Tim Fete. He gives a comprehensive overview of the conditions to help you better understand what ectodermal dysplasias are, some of the most common types and what body parts can be affected.
Donna Garrett-Miller details how her grandson, Noah, was born with complications that led to an Ankyloblepharon-Ectodermal Defects-Clefting (AEC) syndrome diagnosis.