A Rare Disease Strategy for All Canadians - Edmonton11:30am-1:30pm | The Westin Edmonton - 10135-100 Street, Edmonton
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
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.
Gilead Sciences Canada Inc
Ed Gudaitis is the General Manager of Gilead Sciences Canada Inc., based in Mississauga Ontario. After obtaining his B.Sc. from Brock University in St. Catherines, Ontario and his MBA from the Richard Ivey School of Business London, Ontario, Ed had a successful career working for Hoffmann-La Roche Limited in various roles of increasing impact. After a 12 year career at Roche, Ed decided to pursue a new career challenge at Gilead Sciences. In June of 2005, he joined Gilead to establish the operation of the Canadian commercial affiliate. In this role he is responsible for overseeing the commercial success of Gilead’s portfolio of products in Canada. Since 2005, Gilead Sciences Canada Inc. has become one of the fastest growing pharmaceutical companies in Canada.
Ed has prior experience in a number of therapeutic areas and functional roles. He has worked in Oncology, Transplantation, Hepatitis, and HIV. His functional experience spans Business Unit Leadership, Marketing and Sales Management, Market Access, Pricing, Health Economics and Clinical Research. Ed also has experience launching significant products in the US market for Gilead as a result of his time working within Gilead’s US HIV Business. When not working to grow Gilead’s business, Ed enjoys travelling with his family, sports and tending to his wine collection.
Gilead Sciences is a leading biopharmaceutical company headquartered in Foster City, California. Gilead’s portfolio is focussed on areas of high unmet need, particularly HIV, Hepatitis C and B, Oncology, Respiratory and Cardiopulmonary. Ed can be reached at email@example.com.
Ian M. MacDonald MSc, MD CM
Professor, Department of Ophthalmology and Visual Sciences
University of Alberta
Ian M. MacDonald MSc, MD CM is a Professor in the Department of Ophthalmology and Visual Sciences, University of Alberta and recently stepped down after four terms as its Chair. From 2007-2008, he served as Branch Chief of Ophthalmic Genetics at the National Eye Institute of the NIH in Bethesda, MD. A McGill graduate in Medicine, Dr. MacDonald completed Ophthalmology residency training at the University of Ottawa and Clinical Genetics fellowship training at the University of Ottawa, Queen’s University, Kingston and the Hospital for Sick Children, Toronto. He was a Career Scientist of the Ontario Ministry of Health at the University of Ottawa prior to moving to Edmonton in 1992.
His main research interest is inherited retinal disorders, in particular, maculopathies and choroideremia. In 2009, in recognition of his work in Canada to foster the development of academic Ophthalmology, he was elected to as a Fellow of the Canadian Academy of Health Sciences.
Research Support: Alberta Innovates-Health Solutions; Choroideremia Research Foundation, Canada Inc.; Foundation Fighting Blindness, Canada; Canadian Institutes for Health Research, Canadian Foundation for Innovation
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.