September 2015

A Rare Disease Strategy for All Canadians - Toronto

11:30am-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.

Member Pricing:
Individual seat: $89 +HST
Table (seats 10): $800 +HST

Guest Pricing:
Individual: $110 +HST
Table (seats 10): $990 +HST

A Rare Disease Strategy for All Canadians - Toronto

Clarissa Desjardins

Founder and CEO
Clementia Pharmaceuticals

Clarissa Desjardins

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

Senior Investigator
Lunenfeld-Tanenbaum Research Institute, Mount Sinai Hospital

Dr. Daniel Drucker

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.

Durhane Wong-Rieger, Ph.D.

President & CEO
Canadian Organization for Rare Disorders

Durhane Wong-Rieger, Ph.D.

Durhane Wong-Rieger has served on numerous health policy advisory committees and panels and is a member of the Advisory Board for the Canadian Institutes of Health Research Institute of Genetics and the Patient Liaison Forum for the Canadian Drugs and Technologies in Health. Durhane is immediate Past-Chair of the International Alliance of Patient Organizations, and Board Member representing patient interests at DIA International Association. She has a PhD in psychology from McGill University.

Fred Horne

Senior Advisor, 3Sixty Public Affairs
Former Alberta Health Minister

Fred Horne

Fred Horne is a Canadian health policy consultant and served as Alberta’s Minister of Health from 2011-2014. A frequent speaker and panelist on health system issues, he is currently Principal of Horne and Associates, Health Policy Consultants; Chair of Mohawk Medbuy Corporation, a national health sector supply chain management organization; and Senior Advisor to Ottawa-based 3Sixty Public Affairs. He was appointed Adjunct Professor in the University of Alberta’s School of Public Health in 2015.

Horne’s career in health policy spans over thirty years. Current areas of focus include value-based health care, seniors care, health system governance and pharmaceutical policy.

Horne also serves on the boards of the Canadian Frailty Network (National Centre of Excellence) and Providence Living, and on the Health Policy Council of Canada’s C.D. Howe Institute.

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