Durhane Wong-Rieger, PhD
President & CEO
Canadian Organization for Rare Disorders
To truly help rare disease patients, Canada must turn promises into action and funding.
In 2015, the Canadian Organization for Rare Disorders (CORD) presented to the federal government a National Rare Disease Strategy. In March 2023, the federal government announced $1.5 billion over three years for a Rare Disease Drug Strategy, with $1.4 billion in provincial/territorial bilateral agreements. According to the terms, provinces need cover only one drug from a “common list” of 12 drugs in the first two years, and by year three, assume only 10 per cent of the funding for drugs on the common list, with federal funds covering the remaining 90 per cent. However, monies saved from provincial drug budgets need not be redirected to other rare disease services. The impact? The $1.4 billion will result in almost no net sustainable benefit for persons living with rare disease, unless governments take a different course of action now.
Healthcare professionals are planning to coordinate care and research under the new Canadian Rare Disease Network; the patient community, with leadership from CORD, is engaged in all areas from research and clinical trials to registries and evidence development; and advances in genetics, digital technology and new therapeutics are creating unprecedented opportunities for rare disease diagnosis, treatment, and prevention.
The time is now for Canada to catch up with and surpass the rest of the world with national, provincial, and local programs for rare disorders. As we head into another election, we recognize that 2025 is not just like 2015 for rare disorders. Indeed, it will be much worse if we squander the $1.4 billion and do not invest financial and human capital in coordinated, sustainable, comprehensive rare disease plans focused on improving the lives of Canadians.
To learn more, visit raredisorders.ca.
