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.
Breast Development and Ectodermal Dysplasias
Did you know that ectodermal dysplasia can affect breast development in both females and males? Learn how and why it’s related to sweat glands in this new library article. Find out about the various ways breasts can be affected, potential treatment options and how to discuss the issue if your child is affected.
Family Building Options
When a genetic condition is diagnosed in an individual or is known to run in the family, there are often questions about implications for passing the condition on to future offspring. Questions can arise about whether any options exist to predict the likelihood that a future child would be affected by the condition, or even whether options exist to decrease or avoid the risk of future child having the condition. Learn about these options.
Vulvar Skin Care for Ectodermal Dysplasias
Women affected by ectodermal dysplasias can experience symptoms that are specific to being female and can be sensitive to talk about. We have a new library resource that these women will find useful for vulvar and vaginal care.
Advice on Treatment with Dental Implants in Hypohidrotic Ectodermal Dysplasia
Researchers have learned that the bone found in the jaws of individuals affected by hypohidrotic ectodermal dysplasia is extremely hard and can cause complications for dental surgery. Learn what your dentist should know if you are considering dental implants.