WHAT IS RAREi?
RAREi is an informal network of Canadian research-based bio-pharmaceutical organizations involved in developing therapeutics for rare diseases. The purpose of RAREi is to provide a forum to address common public policy issues.
Vision
To shape the Canadian health system and policy environment to facilitate patient access to diagnostics and medicines that improve the lives of Canadians with rare disorders.
Mission
RAREi is an informal network of research-based bio pharmaceutical innovators committed to monitoring, responding and shaping policy issues in the Canadian rare disease environment.
Objective
To affect positive policy change in the rare disease environment within the Canadian health care system to improve the health of Canadians with rare disorders and improve patient access to orphan medicines.
Our Goals
MONITOR
the changing rare disease environment in Canada to identify key policy issues and trends and assess their impact on stakeholders
Recent Submissions
Submission to Quebec Health Commission on the study of Bill 15 (with unofficial translation)
May 19, 2023
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Response to the PMPRB Price Review Approach During the Interim Period
July 16, 2021
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Response to CADTH’s Pan-Canadian National Formulary Discussion Paper
February 25, 2021
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Finance Canada's Pre-Budget Consultation for
Budget 2022-23
February 25, 2021
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Submission on the Proposed Changes to the PMPRB Guidelines, August 2021
August 9, 2021
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Request for a delay in the implementation of the Patented Medicines Regulations
May 21, 2021
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Submission to Health Canada re: National Rare Disease Treatment Strategy Consultation
March 26, 2021
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Finance Canada's Pre-Budget Consultation for Budget 2021-22
February 19, 2021
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January 2021 Guidelines Amendments Consultation: gap medicines and compliance timelines
February 15, 2021
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Download PDF [163Kb]
Response letter to CADTH Pharmaceutical Review Update – Issue 16
August 10, 2020
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Download PDF [212Kb]