A Rare Disease Strategy for All Canadians - Toronto11:30am-1:30pm | VENUE CHANGE: Marriott Eaton Centre - 525 Bay St., Toronto
Rare disease is a public health issue on par with diabetes and all cancers combined. About 8% of Canadians, or 3 million individuals, have a rare disease. Nearly two-thirds of those with rare diseases are children and about half will have no known previous history of a rare disease. Canadians have benefitted from public health strategies in diabetes, cancer, heart disease and mental illness whereas the approach to rare diseases has remained fragmented across the country. As a result, Canadian families with rare illnesses face extraordinary challenges, including misdiagnoses, unnecessary surgeries, social isolation, financial hardship, lack of treatment options and early death.
Canada is lagging behind other countries in its approach to rare diseases. Almost every other developed country has recognized the wide gap in access to healthcare and services between those with rare disease and those living with common diseases. They have adopted appropriate strategies and policies to help support those living with rare diseases.
That’s why the Canadian Organization for Rare Disorders (CORD) has launched Canada’s Rare Disease Strategy, which is a plan for collaborative action to achieve five goals:
• Improving early detection and prevention
• Providing timely, equitable and evidence-informed care
• Enhancing community support
• Providing sustainable access to promising therapies, and
• Promoting innovative research.
Through this strategy, we can reduce unnecessary delays in testing, wrong diagnoses and missed opportunities to treat. Similar approaches to collaboration and coordination have been successful in other areas, such as cancer, diabetes and mental health. Now is the time for Canada to act and provide hope and treatment to Canadians and their families who are impacted by a rare disorder.
CORD is embarking on a series of Economic Club of Canada luncheons to discuss the strategy and how Canada can improve the lives of people with rare disease.
Individual seat: $89 +HST
Table (seats 10): $800 +HST
Individual: $110 +HST
Table (seats 10): $990 +HST
Founder and CEO
Dr Clarissa Desjardins is a serial entrepreneur who takes part in all aspects of company creation from conception to financing to the marketplace. Dr Desjardins was the founder of Advanced Bioconcept, which was sold to NEN Life Sciences (Perkin Elmer) in 1998, and cofounder of Caprion Pharmaceuticals Inc., a biotechnology company focused on proteomic biomarker discovery and drug development, where she was executive vice-president of corporate development. Prior to Clementia, Dr Desjardins was CEO at the Centre d’excellence en médecine personnalisée (CEPMED), a federally and privately funded non-profit enterprise created to promote personalized medicine through education, policy, and public-private research partnerships. She received the BRIO award for outstanding contributions to the biotechnology industry from the Quebec Biotechnology Association, was nominated to Ernst & Young’s Entrepreneur of the Year award, and was one of Canada’s top young Canadians likely to influence the future by the Globe and Mail. Dr Desjardins has been a Board Member on numerous private and public companies including the scientific advisory council of the Canadian Academy of Sciences. She earned a PhD in Neurology and Neurosurgery from McGill’s Faculty of Medicine and was a Medical Research Council postdoctoral fellow at the Douglas Hospital Research Centre.
Dr. Daniel Drucker
Lunenfeld-Tanenbaum Research Institute, Mount Sinai Hospital
Dr. Drucker is currently a Professor of Medicine at the University of Toronto, who studies a family of hormones produced in the pancreas, gastrointestinal tract and brain at his laboratory in the Lunenfeld Tanenbaum Research Institute at Toronto’s Mount Sinai Hospital. He holds a Canada Research Chair in Regulatory Peptides and the Banting and Best Diabetes Centre-Novo Nordisk Chair in Incretin Biology. Research carried out at his laboratory has led to the development of two new classes of therapies for the treatment of Type 2 diabetes and a new therapy for patients with short bowel syndrome. His current work may help patients with Crohn’s disease and other intestinal disorders.
Dr. Drucker received his M.D. from the University of Toronto in 1980. He received the Prix Galien Canada Research Award 2008 for his substantial contribution to the diagnosis, prevention or treatment of diseases, the 2009 Clinical Investigator Award from The Endocrine Society and the 2011 Claude Bernard Lecture/Award of the European Association for the Study of Diabetes. In July 2015, Dr. Drucker was named an Officer of the Order of Canada.
President & CEO
Canadian Organization for Rare Disorders
Durhane is Immediate Past-Chair of the International Alliance of Patient Organizations, Co-Chair of the Health Technology Assessment International Patient /Citizen Involvement Interest Group and Board Member of DIA International. In Canada, she is President of the Institute for Optimizing Health Outcomes, President of the Canadian Organization for Rare Disorders and chair of the Consumer Advocare Network, a national network for patient engagement in healthcare policy and advocacy. She is a certified Health Coach and licensed T-Trainer with the Stanford-based Living A Healthy Life with Chronic Conditions.
Dr. Wong-Rieger has served on numerous health policy advisory committees and panels and is member of the Advisory Board for the Canadian Institutes of Health Research Institute of Genetics.
Durhane has a PhD in psychology from McGill University and was professor of psychology at the University of Windsor in Canada.
Mr. Fred Horne
Former Minister of Health
Fred Horne served as Alberta’s Minister of Health from 2011-2014. A frequent speaker and panelist on health system issues in Canada, Fred is currently Principal of Horne and Associates, Health Policy Consultants, and Adjunct Professor with the University of Alberta’s School of Public Health.
Fred began his career as a community health planner and offers over thirty years’ experience in health policy development, health system design and transformation, and stakeholder engagement. He has worked extensively with provincial governments, and national and international research and stakeholder organizations across Canada and abroad. Organizations with which he has been associated include the Ontario Ministry of Health (District Health Council Program), Alberta Health (Director of Sustainability), the Conference Board of Canada, Mayo Clinic, and many others.
Fred holds an MBA from Royal Roads University and the Certificate in Dispute
Resolution from York University. He currently serves on a number of boards in the not-for-profit and private sectors.
As Minister of Health, he was responsible for the province’s $18 billion health budget, the Ministry of Health and Alberta Health Services, the province’s health delivery organization and the fifth largest employer in Canada.