Jayden Clark’s skin as a baby was so fragile at one point it caused a life threatening infection. Even small brushes of his skin could cause it to breakdown. Now 19, Jayden is a thrill seeker! Learn more about his extensive medical journey, his passions and the special message he has for others with ectodermal dysplasias who find it hard to smile.
For four days in October, 80 experts from around the world came together to chart a course for the future of ectodermal dysplasias and rare disease research. The ultimate goal was: “Translating Discovery to Therapy”. Find out how the International Ectodermal Dysplasias Research Conference will impact diagnosis and therapy development.
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.
As a nonprofit organization serving the ectodermal dysplasias community committed to transparency, we are happy to share with you our 2017 Annual IMPACT Report. Here we report on just a few of the many activities and accomplishments from 2017.
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.