DIRECTOR OF RESEARCH, NATIONAL ORGANIZATION FOR RARE DISORDERS
Danbury, Connecticut, United States
As Director of Research Programs at NORD, Vanessa Boulanger, MSc, is responsible for leading the growth and development of NORD’s research department. Current initiatives include the IAMRARE Registry Program and NORD’s research grants program, which has resulted in the development of at least two FDA-approved orphan products. Previously, Vanessa held research and leadership positions at the Dana-Farber Cancer Institute and the Harvard T.H. Chan School of Public Health, where she earned her Master of Science degree, and a lecturer position at Regis College in the School of Health Sciences Public Health Program. She has more than 10 years of experience addressing health, human rights and social inequalities from a range of health and development perspectives.
11:00 AM - 12:00 PM
Wednesday, June 5
Telling the Story: How Collaborative Research Models Address Knowledge Gaps and Bring Transparency to the Rare Disease Patient Journey
This panel will provide insights on the distinct contributions of patient experience data and real…