The Power of Sharing Our Journey with EEC Syndrome

An NFED dad and self-described introvert finds the strength in being vulnerable and the power that comes from sharing your story. He and his family share how they are facing his son’s challenges with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome and using it as an opportunity to raise awareness and funds.

Ectodermal Dysplasias Awareness Month 2017

An estimated 3.5 of 10,000 people are affected by ectodermal dysplasias. Very few people have heard about these conditions or know about the challenges people with it face. You can help us change that number. Join the National Foundation for Ectodermal Dysplasias (NFED) in our worldwide effort this February to raise awareness and funds for these…


Wow! Can you believe it is February already?  We all know what happens in February – Valentine’s Day, Ground Hog Day, the Super Bowl. But more importantly, it is Ectodermal Dysplasias Awareness Month, #EDAM2016.  This month, we are striving to raise the positive awareness of this condition which affects an estimated 2 in 10,000 births….

Top 10* Most Common Ectodermal Dysplasias

* The numbers are taken from the National Foundation for Ectodermal Dysplasias (NFED) database and are not based on medical literature. There are more than 180 distinct types of ectodermal dysplasias cited in the literature. 1. Ectodermal Dysplasia, Specific Type is Unknown by the NFED – 3,168 People Almost half of the people on the NFED…

14 Things You Didn’t Know About Ectodermal Dysplasias

The first descriptions of clinical cases that might correspond to what we would now classify as ectodermal dysplasias date from 1792. Charles Darwin also cited cases of ectodermal dysplasia in a book he published in 1875. In 1929, Dr. A. A. Weech was the first to coin the term “ectodermal dysplasia” in the medical literature….