Who Could Say "No" to Mary Kaye Richter?

By John A. Stith, M.D. , Professor, Pediatric Otolaryngology Saint Louis University School of Medicine, NFED Board of Directors and Patient Care Council I have been privileged to serve the NFED as a member of the board of directors for several years. It seems like yesterday when Dr. Tim Reichert invited me to consider becoming…

A Tribute to our Scientific Advisory Council

Every once in a while it is important to sit back and reflect on how blessed we are to have such wonderful professional commitment to our organization and the families we serve.  The Scientific Advisory Council (SAC) and Patient Care Council (PCC) are two examples of professional dedication to the NFED.  The PCC focus is…

BE HEARD. INSPIRE OTHERS. BE YOURSELF.

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….

Two Questions… How will you answer?

By Mario Adamo from Zurich, Switzerland Family Conference Volunteer in  Columbus, Ohio Do you remember the movie “The Bucket List”? There were those two individuals, both condemned by cancer, sitting above a pyramid, talking about ancient beliefs. For every soul knocking on paradise’s door, the Gods held two questions: “Did you find joy in your…