On March 22, 2023, the Canadian Federal Government announced the launch of Canada’s Rare Disease Drug Strategy with a $1.5 billion commitment over three years to “improve access to new and emerging drugs, as well as support enhanced access to existing drugs, early diagnosis, and screening for rare diseases, and to improve the collection and use of evidence and strengthen investments in critical research and innovation in rare diseases.” The Canadian Organization for Rare Disorders has led the multi-stakeholder consultations over the past three years to this announcement and will be leading province-by-province consultations to implement a Network of Centres of Expertise, alternative pathways for access to therapeutics, (real world) patient data collection platforms, coordinated rare disease research network, and strategies for patient engagement.
Read the full Press Release: here.