Lobbying Information
Subject Matters
- Health
- Industry
- Science and Technology
- Taxation and Finance
Subject Matter Details
Policies or Program
- Engagement with officials regarding the Advisory Committee on the Implementation of National Pharmacare on issues related to rare disorder and orphan drug policies in the context of the development of national pharmacare.
- Establish Health Canada policies and programs related to orphan drug policy, including part of any national pharmacare program or strategy, to ensure access to essential treatment for rare disorders.
- Establish Innovation, Science and Economic Development Canada policies related to research and development of treatments for rare disorders
- Scientific Research and Experimental Development Tax Incentive Program as it pertains to research and development of treatments for rare disorders
Policies or Program, Regulation
- Share perspectives of the rare disorders patient community on drug pricing issues, specifically regulations and guidelines related to the Patented Medicine Prices Review Board.
Regulation
- Patented Medicines Regulations, specifically, amendments proposed on December 2, 2017 related to the operations of the PMPRB
- Regulatory amendments to the Food and Drugs Act Regulations to implement an orphan drug regulatory framework
Communication Techniques
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Written communication
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Oral communication
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Grass-roots communication
The lobbyist has arranged or expects to arrange one or more meetings on behalf of the client between a public office holder and any other person in the course of this undertaking.
Government Institutions
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Finance Canada (FIN)
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Health Canada (HC)
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House of Commons
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Innovation, Science and Economic Development Canada (ISED)
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Patented Medicine Prices Review Board (PMPRB)
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Prime Minister's Office (PMO)
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Privy Council Office (PCO)
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Senate of Canada
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Treasury Board Of Canada Secretariat (TBS)
Client Details
Government funding
No government funding was received during the last completed financial year.
Client Contact Information
Address:
151 Bloor Street West, Suite 600
Toronto, ON M5S 1S4
Canada
Telephone number:
416-969-7464
Client representative
Durhane Wong-Rieger, President
Parent Company Information
Canadian Organization for Rare Disorders is not a subsidiary of any other parent companies.
Coalition Members Information
Canadian Organization for Rare Disorders is not a coalition.
Individual, organization or corporation with a Direct Interest Beneficiary Information
The activities of Canadian Organization for Rare Disorders are not controlled or directed by another individual, organization or corporation with a direct interest in the outcome of this undertaking.
Subsidiary Beneficiary Information
Canadian Organization for Rare Disorders does not have any subsidiaries that could have a direct interest in the outcome of the undertaking
Lobbyist Details
Emily Bowes
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No public offices held
Business address:
604-150 Metcalfe St
Ottawa, ON K2P 1P1
Canada
Telephone number:
613-800-8340
Consultant Firm and Address
Firm:
3Sixty Public Affairs Inc.
Address:
604-150 Metcalfe St
Ottawa, ON K2P 1P1
Canada
Telephone number:
343-961-9715