TORONTO, March 23, 2022 – The Canadian Organization for Rare Disorders (CORD) is calling on all Canadians to go to Canada4Rare to send to government a simple but vital message – “Save Rare Lives!”
If you are one of the nearly 3 million Canadians suffering from a rare disease, two-thirds of whom are children, you will have poorer access to effective medicines than Canadians with more common conditions. In fact, you will be far less likely to get an essential drug than rare disease patients in many other developed countries.
Why is it the case that rare disease patients in one of the wealthiest countries in the world with a highly developed healthcare system are so disadvantaged in getting the medicines they need? The sad fact is that the Canadian healthcare system has simply ignored rare diseases. Canada remains the only developed country without a national plan for rare diseases and without an orphan drug policy. It can take Canadians with a rare disease more than seven years to get a diagnosis. Canada’s public drug plans provide only 30-40 per cent of rare disease therapies approved by Health Canada.
We can catch up and “Save Rare Lives!”
The good news is that the federal government has committed $1 billion to set up Canada’s first rare disease drug strategy, promised to be rolled out this year. But even after two years of planning, details are not yet finalized. That is why CORD is calling on all Canadians to raise their voices and share their support and enthusiasm with others in their patient or healthcare community, policy makers, the public and their elected representatives at both the federal and provincial levels.
“We believe there is genuine commitment and even consensus at the federal and national level, but there has been relatively little visible dialogue at the level of provincial government and health systems,” said Durhane Wong-Rieger, President and CEO of CORD. “We suspect there are ‘behind-the-scenes’ conversations between the federal and provincial governments, and these need to be moved into the public discourse so all parities will be aligned when that national Rare Disease Drug Strategy is implemented.”
At the Canada4Rare website, Canadians will find a petition they can sign on change.org, as well as easy steps they can quickly take to let their elected representatives know their support to “Save Rare Lives” and to share the initiative through their social media platforms.
About 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 more information, visit www.raredisorders.ca
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For further information:
Durhane Wong-Rieger, Canadian Organization for Rare Disorders
(647) 801-5176, durhane@gmail.com
For interviews and media enquiries:
Don Sancton, Senior Associate, 3Sixty Public Affairs
(514) 206-1191, dsancton@3sixtypublicaffairs.com