Breakout Sessions : Telling the Story: How Collaborative Research Models Address Knowledge Gaps and Bring Transparency to the Rare Disease Patient Journey

jun 5, 2019: 11 a.m. - middag
106AB, Level 100

This panel will provide insights on the distinct contributions of patient experience data and real-world evidence about the drug delivery process. Panelists will have the opportunity to highlight their independent and overlapping work, particularly their commitments to improving treatment access, addressing barriers to effectiveness, advocating for rare disease patients and delivering quality care. By leveraging data-driven insights, we can measure the effectiveness of each stakeholder group - physicians, manufacturers, pharmacists, payors, regulators and patients - so that data can be used to help drive rare disease research, development and innovation, and provide a framework for evidence-informed policy change.


Vanessa Boulanger
Director of Research

Vanita Sharma
Executive Director, Pa...

Brent Clough
Chief Executive Officer

Anne Pariser
Director, Office of Ra...