A Rare Disease Strategy for All Canadians - Vancouver11:30am-1:30pm | Fairmont Pacific Rim - Emerald Ballroom - 1038 Canada Place , Vancouver, BC
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) launched Canada’s Rare Disease Strategy in May 2015 on Parliament Hill in Ottawa. This Strategy, which was developed further to extensive consultations with various stakeholders, 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.
While disability and death due to cancer, cardiovascular disease, and diabetes have dropped by 50% and more over the past 20 to 50 years, Canadians with rare diseases still struggle to access timely and appropriate care, resulting in unnecessary delays in testing, wrong diagnoses, children with physical and mental developmental challenges, and premature death. Canada lags behind more than 35 other countries that have already developed national plans for rare diseases. The implementation of Canada’s Rare Disease Strategy will provide the same hope and treatment as available to Canadians with common conditions and rare disease families around the world.
CORD has embarked on a series of Economic Club of Canada panels to discuss the strategy and how Canada can improve the lives of people with rare diseases. Vancouver is the fourth discussion panel held across the country. Previous discussion panels were held in 2015 in Toronto, Edmonton and Ottawa.
Individual seat: $89 +tax
Table (seats 10): $800 +tax
Individual: $110 +tax
Table (seats 10): $990 +tax
Dr. Sylvia Stockler, MD, PhD, MBA
Clinical Investigator, CFRI Professor and Head, Division of Biochemical Diseases, Department of Pediatrics, University of British Columbia Program Director, Biochemical Diseases, BC Children's Hospital
is an expert in pediatric metabolic diseases who has championed international research efforts on rare metabolic diseases. She is Clinical Investigator at the Child and Family Research Institute, Professor and Head, Division of Biochemical Diseases, Department of Pediatrics, University of British Columbia and Program Director, Biochemical Diseases, BC Children's Hospital. Dr. Stockler applies an integrated approach to understanding genetic disorders, with a focus on treatable intellectual disabilities. Dr. Stockler’s daily work in rare diseases is driven by the goals of improving existing treatments while also identifying new therapies. Presently, Dr. Stockler participates as both principal and co-investigator in several national and international clinical trials and disease registries, with mandates to find evidence for new and existing therapies for rare diseases. Dr. Stockler has published over 200 peer reviewed articles and book chapters. Dr. Stockler teaches biochemical genetics to fellows and residents and supervises numerous PhD students engaged in rare disease research and concepts of individualized patient care. She has received national and global recognition for her clinical and research activities.
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.
Robin Sherrington, PhD
Senior Vice President Business & Corporate Development
Xenon Pharmaceuticals Inc.
Robin Sherrington, PhD, Senior Vice President of Business & Corporate Development for Xenon Pharmaceuticals has twenty years of biopharmaceutical industry experience. He has successfully negotiated partnerships with Roche, Takeda, Merck, Isis, Genentech and Teva, and Xenon’s Genome Canada, Genome BC, and IRAP funded projects. In aggregate these deals could be worth over $1.5 billion in milestone payments. Prior to his current role, Robin was the Head of Xenon’s human genetic discovery which discovered multiple genes for rare disorders including Nav1.7 as the causal gene for congenital indifference to pain and he was also a project leader for Xenon’s pain drug XEN402. Prior to joining Xenon, Robin was a neuroscientist at Pfizer and Parke-Davis, Axys Pharmaceuticals and Sequana Therapeutics. A neurogeneticist by training, he received his PhD from the University College London in the UK and post-doctoral training at University of Toronto, where he was a member of the team and the leading author that reported the cloning of the early onset Alzheimer’s presenilin disease genes.