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Wednesday, November 13 • 2:30pm - 3:45pm
Bridging the Gap: Timely Patient Access to Innovative Medicines in the Rare Disease and Disorder Space / Combler les lacunes : accès opportun des patients à des médicaments novateurs dans le domaine des maladies et des troubles rares

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Panel Organized by: Hoffmann-La Roche Ltd.

Rare diseases have a significant impact on individuals, their families and society, yet treatments are only
available for approximately 200 rare diseases. The unmet need in rare diseases is a pressing concern that
must be addressed.

The lack of a Canadian Rare Disease Framework means drugs for rare diseases (DRDs) are subject to the
same review, evaluation framework and evidence requirements as other drugs. Evaluating DRDs with the
current review process and recommendation framework limits decision making.

This panel aims to explore how novel mechanisms and innovative constructs, effectively applied in other
markets, may enable Canadian regulators and health technology assessment bodies to bridge the gap;
overcoming systemic barriers and lengthy delays, in patients accessing life altering drugs for rare disease.

avatar for Bill Dempster

Bill Dempster

CEO, 3Sixty Public Affairs
As CEO of 3Sixty Public Affairs, Bill develops and implements high-impact government relations, policy and business strategies for clients in the health and life sciences sector. For over a decade, Bill has drawn on deep business, legal and government experience to help clients find... Read More →

avatar for Tania Stafinski

Tania Stafinski

Co-founder and Director, Health Technology and Policy Unit in the School of Public Health at the University of Alberta
Tania is Co-founder and Director of the Health Technology and Policy Unit in the School of Public Health at the University of Alberta.  She is also Academic Advisor to the School’s Fellowship Program in Health System Improvement.  Currently, she co-holds multi-year grants from... Read More →
avatar for Adrian Thorogood

Adrian Thorogood

Lawyer and Academic Associate, Centre of Genomics and Policy (CGP), McGill University
Adrian is a lawyer and Academic Associate at the Centre of Genomics and Policy (CGP) at McGill University. His legal research focuses on how genomic sequencing platforms, information and networking technologies, open science practices, and patient empowerment movements are disrupting... Read More →
avatar for Durhane Wong-Rieger

Durhane Wong-Rieger

President & CEO, Canadian Organization for Rare Disorders
Durhane is the President & CEO of the Canadian Organization for Rare Disorders, Chair of the Consumer Advocare Network, President & CEO of the Institute for Optimizing Health Outcomes, Chair of Canadian Heart Patient Alliance and member of Genome Canada Steering Committee for the... Read More →
avatar for Judith Glennie

Judith Glennie

President, J.L. Glennie Consulting Inc.
Dr. Glennie is the President of J.L. Glennie Consulting Inc., providing a range of strategic advisory services to non-profit, government and industry clients. Judy is a senior member of the health care community, with over 25 years of experience in the national and international pharmaceutical... Read More →

Wednesday November 13, 2019 2:30pm - 3:45pm EST
Governor General III