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

11:00 AM - 12:00 PM, Wednesday, June 5,2019 ・ 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.
Moderator
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Director of Research
National Organization for Rare Disorders
Speakers
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Director of Research
National Organization for Rare Disorders
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Chief Executive Officer
Trio Health
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Executive Director, Patient Advocacy and Public Policy
Strongbridge Biopharma