Client of a consultant lobbyist
Canadian Organization for Rare Disorders
- Meetings this Parliament
- 2
- With MPs
- 1
- Since Nov 2021
- 2
- Active registrations
- 0
Most recent reported meeting: May 27, 2026.
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.
← LobbyingRegistrations in effect
Canadian Organization for Rare Disorders has no active registration. Organizations must register once paid lobbying passes the legal threshold, and their registration ends when it stops.
Reported meetings
Spreadsheet-
Reported by Stephanie Levee · Consultant
- Mackenzy Metcalfe · Policy Advisor, Finance Canada (FIN)
Regulatory amendments and/or guidelines related to the Food and Drugs Act Regulations and Health Canada to implement an orphan drug regulatory framework. Read more
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.
Implementation of the National Strategy for Drugs for Rare Diseases, and other policies or programs for rare disease medicines.
Enhancements related to intellectual property legislation, regulations and policies applicable to rare disease medicines.
Federally-funded public drug plans, with respect to reimbursement for rare disease medicines for federal plan beneficiaries.
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Reported by Stephanie Levee · Consultant
- Helena Jaczek · Member of Parliament
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. Read more
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.
Regulatory amendments and/or guidelines related to the Food and Drugs Act Regulations and Health Canada to implement an orphan drug regulatory framework.
Enhancements related to intellectual property legislation, regulations and policies applicable to rare disease medicines.
Federally-funded public drug plans, with respect to reimbursement for rare disease medicines for federal plan beneficiaries.
Implementation of the National Strategy for Drugs for Rare Diseases, and other policies or programs for rare disease medicines.
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.