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Lobbying by Canadian Organization for Rare Disorders: its registrations, its lobbyists, the bills it has named and every meeting it has reported with federal office holders since November 2021.

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Client of a consultant lobbyist

Canadian Organization for Rare Disorders

Meetings this Parliament
1
With MPs
1
Since Nov 2021
1
Active registrations
1

Most recent reported meeting: Oct 10, 2025.

Registrations in effect

Consultant In effect since May 21, 2026

Consultant Johanne Chambers of 3Sixty Public Affairs Inc.

Consultant lobbyists

  • Johanne Chambers Former public office holder

    Formerly Negotiator, Negotiations East Branch, Indian and Northern Affairs Canada (2007–2014)

    Formerly Lawyer, Department of Legal Services for INAC, Department of Justice (2006–2007)

    Formerly Senior Policy Analyst, Treaties, Research, International and Gender Equality Branch, Indian and Northern Affairs Canada (2004–2006)

Institutions they may lobby: Finance Canada (FIN), Global Affairs Canada (GAC), Health Canada (HC), House of Commons, Innovation, Science and Economic Development Canada (ISED), Patented Medicine Prices Review Board (PMPRB), Prime Minister's Office (PMO), Privy Council Office (PCO), Public Health Agency of Canada (PHAC), Senate of Canada, Treasury Board Of Canada Secretariat (TBS)

What they're lobbying on (10)
  • Discussions on the implications of Bill C-265 An Act to amend the Food and Drugs Act (List of Therapeutic Products Pre-approved for Special Access) for patients’ access to drugs for rare diseases.
  • 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
  • Federally-funded public drug plans, with respect to reimbursement for rare disease medicines for federal plan beneficiaries.
  • Enhancements related to intellectual property legislation, regulations and policies applicable to rare disease medicines.
  • Regulatory amendments and/or guidelines related to the Food and Drugs Act Regulations and Health Canada to implement an orphan drug regulatory framework.
  • Scientific Research and Experimental Development Tax Incentive Program as it pertains to research and development of treatments for rare disorders.
  • 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
  • Innovation, Science and Economic Development Canada policies related to research and development for treatments for rare disorders.
  • 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.

Registration 942584-366137-9. Look it up in the official Registry

Reported meetings

Spreadsheet

  • Reported by Johanne Chambers · Consultant

    Regulatory amendments to the Food and Drugs Act Regulations to implement an orphan drug regulatory framework. Read more

    Establish Innovation, Science and Economic Development Canada policies related to research and development of treatments for rare disorders

    Engagement with officials on issues related to the National Strategy for Rare Disease Drugs, and other policies or programs.

    Official report

From the Office of the Commissioner of Lobbying's open data, published November 5, 2026. Reports cover oral, arranged meetings with designated public office holders since November 22, 2021; lobbyists file them by the 15th of the following month. Names of MPs are matched to the current House of Commons, and bills are linked when the lobbyist's own description makes clear which bill it means. Contains information licensed under the Open Data Licence Agreement — Office of the Commissioner of Lobbying. Licence. PolitiKit is independent and is not endorsed by the Commissioner of Lobbying.