CORD has partnered with the Economic Club of Canada (ECC) to present Canada’s Rare Disease Strategy in Toronto on September 24, 2015 and other cities are planned across Canada.
Location and Date:
Rare Diseases: A Public Health Issue
In just a few years, Canada has emerged from a state of “not needing an Orphan Drug Policy” to becoming an acknowledged global leader in rare diseases, especially in research and patient advocacy. Which makes now a very good time to focus our efforts toward implementing Canada’s Rare Disease Strategy.
Admittedly, Canada has been late to embrace rare diseases. It was just five years ago that CORD pointed out that Canadians had access to only half of the orphan drugs approved in the USA and/or Europe. Approved drugs were routinely rejected for coverage by the public drug plans. Even today, there remains a lag of two to seven years for patients to get access. Similarly, over the past 30 years, while the USA, Europe, and Japan have invested hundreds of millions of dollars in rare disease research, Canada did not target research funding for rare diseases until 2012. But things are changing rapidly, with Canada’s Orphan Drug Regulatory Framework due to be implemented imminently and Canadian research sites now among the leaders in international collaborative projects.
Similarly, in 2009 when the European Union called for the development of national rare disease plans, almost all member states responded, as have countries outside the EU, such as Mexico and Peru. Integral to the national plans are Centres of Reference, for which the EU will issue a call for proposals in fall 2015.
Meanwhile in Canada, we have pockets of rare disease expertise, but most are neither linked to general practitioners and paediatricians nor formally to one another. Hence the need for the coalescing force of Canada’s Rare Disease Strategy and the call to collaborate on a five-point action plan so that collectively we can:
A key to success in Europe has been endorsement of “solidarity” as a fundamental value and “equal access” as a guiding principle for all patients regardless of what they suffer from or where they live. Rare diseases are not limited to a small population but are regarded as a public health issue affecting everyone.
Intended Audience: Senior Leaders from business, government industry, academic and media organizations.
Media Coverage: The dialogues are intended to be a high profile event with extensive media coverage. CPAC will be invited, as will leading health reporters and advocacy groups from across the country.
Moderated by: The Honourable Fred Horne, Former Minister of Health, Alberta
MEDIA ALERT: Canadian Organization for Rare Disorders urges Ontario to implement Canada's first Rare Disease Strategy TORONTO, Feb. 27, 2017 /CNW/ - On International Rare Disease Day, patient representatives from the Canadian Organization for Rare Disorders (CORD) will meet with John Fraser, Parliamentary Assistant to the Minister of Health and Long-Term Care and other MPPs to share their experiences of living with rare disorders.
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. 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.