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About RAREi


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RAREi is an informal network of Canadian research-based bio-pharmaceutical organizations involved in developing therapeutics for rare diseases. The purpose of RAREis to provide a forum to address common public policy issues.


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.


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.


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

Our Goals
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the changing rare disease environment in Canada to identify key policy issues and trends and assess their impact on stakeholders

Recent Submissions

Recent Submissions

RAREi 2024-25 Pre-Budget Submission to FINA

Aug 4, 2023

Download PDF [193Kb]

Submission to Quebec Health Commission on the study of Bill 15 (with unofficial translation)

May 19, 2023

Download PDF [231Kb]

Submission to HESA on PMPRB study

May 12, 2023

Download PDF [231Kb]

Submission on the October 2022 PMPRB Draft Guidelines

December 5, 2022

Download PDF [298Kb]

Response to the PMPRB Price Review Approach During the Interim Period

July 16, 2021

Download PDF [260Kb]

Response to CADTH’s Pan-Canadian National Formulary Discussion Paper

February 25, 2021

Download PDF [216Kb]

Finance Canada's Pre-Budget Consultation for
Budget 2022-23

February 25, 2021

Download PDF [269Kb]

Submission on the Proposed Changes to the PMPRB Guidelines, August 2021

August 9, 2021

Download PDF [261Kb]

Request for a delay in the implementation of the Patented Medicines Regulations

May 21, 2021

Download PDF [228Kb]

Submission to Health Canada re: National Rare Disease Treatment Strategy Consultation

March 26, 2021

Download PDF [340Kb]

Finance Canada's Pre-Budget Consultation for Budget 2021-22

February 19, 2021

Download PDF [295Kb]

January 2021 Guidelines Amendments Consultation: gap medicines and compliance timelines

February 15, 2021

Download PDF [163Kb]

Follow-up Letter to PM regarding PMPRB Reforms

December 16, 2020

Download PDF [152Kb]

Open Letter to PM regarding PMPRB Reforms

November 9, 2020

Download PDF [195Kb]

Restoring Hope to the Canadian Rare Disease Community

November 6, 2020

Download PDF [580Kb]

Response to PMPRB price controls

October 23, 2020

Download PDF [85Kb]

2021 Federal Pre-budget Submission

August 5, 2020

Download PDF [161Kb]

Response letter to CADTH Pharmaceutical Review Update – Issue 16

August 10, 2020

Download PDF [212Kb]

Submission on the June 2020 PMPRB Draft Guidelines

August 2020

Download PDF [894Kb]

COVID19 Message
Our Members

Our Membership

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Sobi logo.png
Amicus logo.png
Ipsen logo.png
Vertex logo.png
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Recordati logo.png
Biomarin logo.png
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