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.
Taking Care of Your High Risk Loved Ones
You may be worried about how COVID-19 could affect your loved ones who are at higher risk. And that’s stressful. Follow these practical steps to keep you and your family healthy. Your NFED family is here for you!
Coronavirus and Ectodermal Dysplasias
The coronavirus (COVID-19) is dominating the news the past few weeks as more cases are being reported around the world. We reached out to one of our medical advisers to ask whether individuals affected by ectodermal dysplasias have any special considerations to take in regard to the virus. Here’s what we learned.
NFED Families Rise Up for the First International Awareness Day
For the first International Ectodermal Dysplasias Awareness Day, families, friends and supporters in our global network showed up to celebrate.
What It Means to Have Ectodermal Dysplasias
Ectodermal dysplasias are genetic disorders that can be inherited from your parents or happen more spontaneously by changes (or mutations) in your genes before you’re born. They affect about three out of every 10,000 babies. But ectodermal dysplasias are much more than a hidden genetic issue. The disorders are characterized by abnormally functioning hair, nails,…
Free Ectodermal Dysplasia Webinars
We are excited to announce our webinar series for 2020: Conference from your Couch! Join us on the second Wednesday of every other month in 2020 at 7 p.m. central for FREE webinars to learn more about ectodermal dysplasias, symptoms, treatments and research.
Prevent and Treat Nasal Crusting with Ectodermal Dysplasias
Do you or your child have trouble breathing because of “nasal rocks” or “concretions” (aka big boogers)? Find out what causes them and how you can best prevent and treat them.
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.