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Patient Access & Empowerment

Together, Let’s Drive Improved Drug Access for Rare Diseases

Canada’s rare disease patient community is leveraging a $1.5-billion drug strategy to drive accelerated sustainable drug access for rare diseases and beyond.

In March 2023, the federal government announced $1.5 billion over three years to implement Canada’s Rare Disease Drug Strategy. The Canadian Organization for Rare Disorders (CORD) applauded this significant step toward fulfillment of the 2019 promise. We know that $38 million is allocated to CIHR for research grants, $20 million to CADTH and CIHI for real-world evidence, and $16 million for governance. The remaining $1.4 billion will be allocated through bilateral provincial and territorial agreements to improve access to new drugs and to support access to existing drugs, early diagnosis, and screening. But there’s no timeline for execution.

Calling on all stakeholders 

Not mentioned are three core components recommended by CORD-led multi-stakeholder consultations: (1) Rare Disease Network(s) of Expertise that coordinate diagnosis and care across specialists and with community providers; (2) designated Rare Disease Drug Access Pathways to assure timely access with real-world data collection; and (3) Patient Engagement Development to assure rare disease patients and patient organizations are meaningfully engaged in every aspect, with shared decision-making from individual to policy levels. 

We cannot wait. CORD will be driving these components in partnership with the clinical community and through private-public partnerships. We must be ready to take advantage of the $1.4 billion whenever these funds are available and, more importantly, we need to build coordinated comprehensive Rare Disease Networks accessible by all patients regardless of where they live and we must demonstrate innovative pathways focused on making rare disease drugs available to Canadian patients as soon as possible, through clinical trials, early access, and managed access programs. CORD invites all rare disease stakeholders to join us in our consultations and conferences this fall. 

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