Why you’re on the Engagement Committee
I was asked to be on the Engagement Committee because of my involvement with the BCH Family Advisory Council and my experience with the Harvard Wide Pediatric Health Services Research Fellowship.
What expertise/point of view you are bringing to the Committee
I do not have any sort of medical background which means I bring a distinct family perspective to the committee. My daughter was diagnosed with Idiopathic Pulmonary Hypertension, PH, sixteen years ago. PH is a rare disease that effects the heart and lungs. Because PH is so rare I understand the need for multiple centers to cooperate on research in order for there to be sufficient number of study subjects.