Lobbying registration dated 2026-03-18
Registrant: Johanne Chambers
Client: Canadian Organization for Rare Disorders
Targeted institutions:
Finance Canada (FIN)
Treasury Board Of Canada Secretariat (TBS)
Prime Minister's Office (PMO)
House of Commons
Innovation, Science and Economic Development Canada (ISED)
Global Affairs Canada (GAC)
Public Health Agency of Canada (PHAC)
Patented Medicine Prices Review Board (PMPRB)
Privy Council Office (PCO)
Senate of Canada
Health Canada (HC)
Acts: Pharmacare Act
Food and Drugs Act
Government funding received:
Lobbying activity details:
Enhancement to Canada's regulatory and funding environment for new rare disease medicines, including Health Canada authorizations of medicines and framework for clinical trials, health technology assessment processes, reimbursement negotiations and funding decisions to improve access for rare disease patients
Scientific Research and Experimental Development Tax Incentive Program as it pertains to research and development of treatments for rare disorders.
Regulatory amendments and/or guidelines related to the Food and Drugs Act Regulations and Health Canada to implement an orphan drug regulatory framework.
Innovation, Science and Economic Development Canada policies related to research and development for treatments for rare disorders.
Enhancements related to intellectual property legislation, regulations and policies applicable to rare disease medicines.
Regulations, guidelines, policies and programs related to regulatory and reporting functions of the Patented Medicine Prices Review Board as they relate to access for patients to rare disease medicines
Implementation of the Pharmacare Act as it relates to rare disease medicines.
Implementation of the National Strategy for Drugs for Rare Diseases, and other policies or programs for rare disease medicines.
Federally-funded public drug plans, with respect to reimbursement for rare disease medicines for federal plan beneficiaries.