Durhane Wong-Rieger | President, Chief Executive Officer
Canadian Organisation for Rare Disorder & Rare Diseases International
DURHANE WONG-RIEGER, PHD is President & CEO of the Canadian Organization for Rare Disorders, Immediate Past Chair of Rare Disease International, President of Asia Pacific Alliance of Rare Disease Organizations, Treasurer of UN NGO for Rare Diseases, Chair of Patient Advocates Constituency Committee of the International Rare Disease Research Consortium, member of Lancet Commission on Rare Disease, and member of the Editorial Boards of The Patient- Patient Centred Outcomes Research and Rare Diseases and Orphan Drugs Journal, and Global Commission to End the Diagnostic Odyssey for Rare Diseases. In Canada, she is also President & CEO of the Institute for Optimizing Health Outcomes and Chair of the Consumer Advocare Network and Canadian Heart Patient Alliance. She is co-chair of Canada’s Rare Disease Drug Strategy Implementation Advisory Group, member of Canada’s Rare Disease Network Steering Committee and Canada’s Newborn Screening Advisory Group. Durhane has a PhD in psychology from McGill University and was professor at the University of Windsor, Canada. She is a certified Health Coach, lecturer, and author of three books and many articles.
Appearances:
Day 1- World Orphan Drug Congress USA 2025 @ 14:50
Panel: Unlocking the future: The convergence of AI, personalized Medicine, and genomics
Unlocking the Future: The Convergence of AI, Personalized Medicine, and Genomics
AI and genomics are revolutionizing healthcare, accelerating drug discovery, optimizing treatments, and transforming patient outcomes. But how do we bridge the gap between innovation and real-world implementation? Join leading experts as they explore how AI-powered insights and multi-omics are driving precision medicine forward—while tackling critical challenges in regulation, access, and adoption. Don’t miss this dynamic discussion on the breakthroughs shaping the future of healthcare!
Day 2 - World Orphan Drug Congress USA 2025 @ 15:00
Panel: Evolving landscape on patient involvement in rare disease HTA
As the EU Health Technology Assessment (HTA) Regulation reshapes the way health technologies are evaluated across Europe, it brings both new opportunities and challenges for patient involvement in the decision-making process. This regulation emphasizes the importance of integrating patient perspectives into the assessment of treatments, which raises key questions about what successful patient involvement looks like. Effective engagement means ensuring that patients’ lived experiences, needs, and priorities are not only heard but meaningfully influence outcomes. A successful model of involvement goes beyond consultation to co-creation, where patients actively contribute to the design and interpretation of assessments. However, the roles of individual patients and patient organizations in this process differ. Individual patients bring personal insights and lived experience, often providing powerful testimony about the real-world impact of treatments. In contrast, patient organizations represent a broader community of patients, advocating for collective interests and ensuring that diverse patient voices are considered. This panel will explore these dynamics, discussing how individual and organizational contributions can complement each other to create a more patient-centered approach to HTA, and the implications this holds for the future of healthcare policy and practice across Europe.
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