The First Ever Canadian Rare Disease Strategy

1 in 12 Canadians live with a rare disease, but only 60% of treatments for rare disease make it into Canada. In response to this limited access to clinical trials and treatment, a comprehensive strategy aimed at providing hope and treatment to Canadians with rare diseases will debut on Monday.

Prepared by the Canadian Organization for Rare Disorders (CORD), this strategy will be announced at a news conference on Parliament Hill. It will include input from patients, health professionals, researchers, governments and policy makers across Canada.

Back in July, CORD hosted a Summit on Access to Drugs for Rare Diseases in Canmore, Alberta that looked at how our country can improve access to these treatments. At the summit, international experts gathered with members of the Canadian public provincial payers, patient organizations, and the industry to share their insights on how to build off of international best practices.

As Durhane Wong-Rieger, President of CORD, wrote, “We have a window of opportunity to build a framework that becomes a model system globally for how to provide the best treatment for patients with rare diseases.”

We eagerly await Monday’s announcement and anticipate that it will represent a huge step forward in setting up a sustainable system that ensures Canadians with rare diseases have equal access to safe, effective treatments.