On March 22, 2023, the Canadian federal government announced their plan to provide up to $1.5 billion over three years to implement the Rare Disease Drug Strategy, as committed in 2019. The Canadian Organization for Rare Disorders (CORD) was extremely pleased to be part of this announcement as it builds on the Rare Disease Strategy launched by CORD in 2015.
“CORD is especially gratified that the federal government heard our recommendations for a comprehensive strategy that includes investment in infrastructure, including centres of expertise, that will facilitate faster diagnosis and treatment access with on-going patient monitoring and data collection. This is a major step to value-based pharmacare and healthcare,” said Durhane Wong-Rieger, President of CORD.
As listed in Health Canada’s press release, some of the initiatives to help improve consistent access to drugs for rare diseases across the country include:
- $20 million over three years to the Canadian Agency for Drugs and Technologies in Health (CADTH) and the Canadian Institute for Health Information (CIHI) to improve the collection and use of evidence to support decision-making;
- $32 million over five years to the Canadian Institutes of Health Research (CIHR) to advance rare disease research with a focus on developing better diagnostic tools and establishing a robust Canadian rare disease clinical trials network; and,
- $16 million over three years to support the establishment of national governance structures, such as a Health Canada secretariat and a stakeholder Implementation Advisory Group, to support the implementation of the Strategy.
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