Families Educate 50 Doctors and Students About Their Unique Ectodermal Dysplasias Symptoms

Learning about rare conditions like ectodermal dysplasias in a medical journal article or textbook is certainly valuable for medical professionals. But, getting to meet eight individuals with seven different types of ectodermal dysplasias all in one morning is a unique and extraordinary opportunity! More than 50 dermatology professionals at Saint Louis University got that chance thanks to our families.

Families Educate Medical Professionals

Educating medical professionals about ectodermal dysplasia is an important part of our NFED mission. Families played a critical role by volunteering to share their stories and describe the how the rare condition affects them at a Grand Rounds in Fairfax, Va.

Our Powerful Week of Education

Amazing!  Wonderful!  Informative! Fantastic!  Life-Changing! Educational Empowering! Fun! Fascinating! What word best describes our week in Washington D.C.?  They all do!  For me, it is hard to really describe the impact that week made on our entire community.