Tuesday, January 19th, 2016
11:30 am – 1:30 pm – Lunch will be served
Fairmont Pacific Rim
1038 Canada Place
Durhane Wong-Rieger, President & CEO, Canadian Organization for Rare Disorders
Robin Sherrington, PhD, Senior Vice President Business & Corporate Development, Xenon Pharmaceuticals Inc.
Dr. Sylvia Stockler, 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
Mr. Fred Horne, Former Minister of Health, Alberta
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
March 30, 2017
Sheraton Vancouver Wall Centre, 1088 Burrard Street, Vancouver, BC
Date: March 30 - 31, 2017 Location: Sheraton Vancouver Wall Centre, 1088 Burrard Street, Vancouver, BC REGISTER HERE Living Rare: With Research, Possibilities are Limitless With Patients, Anything Imaginable is Achievable! 2-Day Conference: March 30-31, 2017 OBJECTIVES Share experiences of living ... enhanced by a rare condition Connect with groups that improve rare living Create inspired and inspiring solutions within Canada’s Rare Disease Strategy Rare Disease Day 2017 UPDATED DRAFT AGENDA Through videos, testimonials, and facilitated discussions, we will provide an opportunity to get to know the people living with the rare conditions and their patient groups or organizations. Each of the four panels will be organized around one of the four core pillars of Canada’s Rare Disease strategy: diagnosis, expert care, community support, and access to therapy. The fifth pillar, research, will be integral to addressing issues identified in each of the other areas. CORD is offering travel bursaries to patient group representatives to help offset the cost of travel to the Rare Disease Day 2017 Conference. Apply at: https://www.surveymonkey.com/r/rdd17application CORD room rate at the Sheraton $199/night if booked by Feb 28 REGISTER HERE Refund Policy: Cancellations received a minimum of 15 days prior to the event will receive a refund minus an administrative fee of $15.00. This fee covers the cost of processing the registration and refund. Cancellations received after the 15-day deadline and no-shows are non-refundable.