Canada’s Rare Disease Strategy Press Release

TORONTO, September 24, 2015 

The nearly 3 million Canadians with rare diseases deserve the same quality of healthcare as those with cancer, heart disease, and diabetes but until now, barriers to access have seemed insurmountable. Today, participants at a luncheon organized by the Economic Club of Canada were given a strategy that tears down barriers and builds hope.

To prepare Canada’s Rare Disease Strategy, the Canadian Organization for Rare Disorders (CORD) led extensive consultations with hundreds of diverse stakeholders over the past two and a half years. “Rare disease represents Canada’s “biggest” unaddressed public health challenge, on par in numbers with cancer, heart disease and diabetes. Canadian strategies in each of these areas have significantly improved burden of illness, quality of life and survival. So we drew upon the best features of these Canadian strategies and of the 30+ national plans for rare diseases in other countries. We brought together healthcare providers and patients, scientists and volunteer caregivers, pragmatic financiers and idealistic dreamers and have developed a strategy that is both ambitious and achievable,” said Durhane Wong-Rieger, President and CEO of CORD, one of the conference panel participants.

Canada’s Rare Disease Strategy was launched on Parliament Hill in May and calls on the federal and provincial governments to work together with the rare disease community to overcome barriers faced by individuals living with rare diseases, including long delays in diagnosis, problems accessing experts (especially across provinces), and timely access to treatments. The Strategy also addresses the need for national standards for newborn screening for genetic disorders and dedicated funding for rare disease research in Canada.

“The Strategy provides a plan we can implement now to ensure Canadians living with rare diseases have access to emerging drugs and other therapies that compares with the best in the world,” said Fred Horne, former Minister of Health in Alberta and moderator of the event. “Across Europe, governments have recognized that access to these treatments plays a critical role in high-performing health care systems.  It’s time for Canada to catch up.”

Canadian researchers making important contributions to rare diseases were represented on the panel by Dr. Daniel Drucker, Senior Investigator at the Lunenfeld-Tanenbaum Research Institute of Mount Sinai Hospital in Toronto. “There is a lot of interest and research being done in Canada on rare diseases but to translate the research into improved care and new therapies requires a long term coordinated approach that also links to the global research community. Implementation of Canada’s Rare Disease Strategy would go a long way to helping that happen,” he said.

“The Canadian environment is very challenging for companies wanting to develop new treatments for rare diseases,” said panelist Clarissa Desjardins, Founder and CEO of Montreal-based Clementia Pharmaceuticals, a biopharmaceutical company developing a treatment for fibrodysplasia ossificans progressiva (FOP) and other rare diseases. “Our drug approval process and public drug plans have been set up for treatments that are taken by thousands or millions of people, not just a few dozen. We need approval and access pathways that can accommodate small patient populations with high unmet medical needs who need access to new treatments as soon as possible and that enable the industry to recoup its investment and be sustainable.”

The Toronto luncheon is the first of five being held across the country by CORD and the Economic Club of Canada in the coming months to discuss the need for prompt implementation of Canada’s Rare Disease Strategy. The next is in Edmonton on October 7, with others following in Ottawa, Montreal and Vancouver.


About Canada’s Rare Disease Strategy

Canada’s Rare Disease Strategy was developed by the Canadian Organization for Rare Disorders following extensive consultations with patients, caregivers, healthcare providers and researchers, as well as public and private-sector groups. It was launched on Parliament Hill in May 2015. It establishes five major goals with a total of 20 related and practical actions. The five goals are: 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. For the complete plan, go to:


About the Canadian Organization for Rare Disorders (CORD)

CORD is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.


For further information:

Kara Merpaw
The Economic Club of Canada
(416) 333-8795


Durhane Wong-Rieger
Canadian Organization for Rare Disorders
(647) 801-5176