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Canadian Organization for Rare Disorders (CORD)

CORD: Rare Disease Day 2023

March 9, 2023

The Canadian Organization for Rare Disorders (CORD) held a breakfast reception at Queen’s Park, in Toronto, Ontario, on Rare Disease Day – February 28, 2023. Defeat Duchenne Canada was proud to attend and celebrate the accomplishments in medical research for rare diseases and discuss what we need to improve in diagnosis, care, and access to treatment.

As part of Rare Disease Day, CORD issued the press release “Canadians with rare diseases do not get timely diagnosis and care – with funding and the plan in place, it’s time for political leadership”:

More than three million Canadians living with a rare disease have the added heartache of knowing that they, or their child, were diagnosed too late or didn’t get the specialist care they needed to avoid irreparable harm or disability. These were among the distressing findings from the latest national survey by Ipsos Canada, commissioned by the Canadian Organization for Rare Disorders (CORD) and released today, Rare Disease Day.

The national Ipsos survey found that significant delays and issues arise for patients and their families in all key areas – including long delays in diagnosis, disease and knowledge information gaps, lack of access to drugs, and lack of coordinated and accessible care.

Canada is the only major developed nation without a comprehensive rare disease strategy to help patients and families. Canadians have been waiting for years for one to be finalized and implemented. The federal government in 2019 committed new spending of $500 million a year for a national plan for drugs for rare disorders, starting in the current government year. With just one month left, the plan has not been finalized, and no money has been made available to help improve healthcare services, access to drugs, and patient group support.

“We know what has to be done, health leaders are ready to move, and we even have the funding allocated but while governments procrastinate, patients and families continue to suffer.

These new survey results confirm that rare disease patients and families are being left behind, even as governments and health systems prepare to recover from the devastation of COVID.”

Durhane Wong-Rieger, President and CEO of CORD

The new Ipsos survey featured input from over 500 Canadian patients and their direct caregivers, highlighting their challenges and their perspectives on what emerging government strategies should focus on. The overwhelming majority support the creation of specialized centres networked to local healthcare professionals to reach all patients wherever they live in Canada.

Read the full press release and Ipsos report below: