Maarten and Linus were the first two boys treated before they were born with an investigational medicine for X-linked hypohidrotic ectodermal dysplasia. The boys are now 7 years old. The long-term results are incredibly positive! Read how they and the four other boys who were treated are doing.
Navigating the Risk for Respiratory Problems in Ectodermal Dysplasias
While there is little published about respiratory problems in ectodermal dysplasias, there is evidence to suggest an increased risk. Learn about the risks, potential causes and recommendations for prevention and treatment.
Ectodermal Dysplasia Treatment Videos Now Available
The one thing all our families want is information about ectodermal dysplasia treatment. You want to know what to expect for you or your child. You are seeking treatment options. You are looking for answers. That’s where the National Foundation for Ectodermal Dysplasias comes in. We now have six free videos of educational workshops from our 2017 Family Conference available to watch. You can hear from our experts, see their presentations and learn.