Registration - Consultant

Canadian Organization for Rare Disorders / Stephanie Levee, Consultant

Registration Information

Client name: Canadian Organization for Rare Disorders
Lobbyist name: Stephanie Levee, Consultant
Initial registration start date: 2020-01-29
Registration status: Active
Registration Number: 945399-365813

Associated Communications

Total Number of Communication Reports: 0

Monthly communication reports in the last 6 months: 0

Version 3 of 3 (2022-11-14 to present)

Registration versions:

Version 3 of 3 (2022-11-14 to present)

Lobbying Information

Subject Matters

Health
Industry
Science and Technology
Taxation and Finance

Subject Matter Details

Policies or Program

Engagement with officials on issues related to rare disorder and orphan drug policies in the context of the development of national pharmacare.
Establish Health Canada policies or programs related to orphan drug policy to address treatment for rare disorders, including part of any national pharmacare program or strategy
Establish Health Canada policies 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

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

Communication Techniques

Written communication
Oral communication
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

Finance Canada (FIN)
Health Canada (HC)
House of Commons
Innovation, Science and Economic Development Canada (ISED)
Patented Medicine Prices Review Board (PMPRB)
Prime Minister's Office (PMO)
Senate of Canada
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

Stephanie Levee | Public offices held

Business address:
150 Metcalfe Street, Suite 604
Ottawa, ON K2S 2L8
Canada

Telephone number: 613-800-8340

Consultant Firm and Address

Firm: 3Sixty Public Affairs Inc.

Address:
150 Metcalfe Street, Suite 604
Ottawa, ON K2P 1P1
Canada

Telephone number: 613-800-8340

Canadian Organization for Rare Disorders

The following names have been used on or after July 2, 2008

The following names have been used on or after July 2, 2008
Name	From	To
Canadian Organization for Rare Disorders	2020-01-29	current

Canadian Organization for Rare Disorders

Responsible Officer History
Responsible Officer Name	From (YYYY-MM-DD)	To (YYYY-MM-DD)

List of Public Offices Held
Position	Period Held	Last Date Designated Public Office Held
Post-Secondary Co-Operative Educational Intern Department of Canadian Heritage, Centre of Expertise for Grants & Contribution	May 2018 to August 2018	Not a designated office

List of Public Offices Held
Position	Period Held	Last Date Designated Public Office Held
Post-Secondary Co-Operative Educational Intern Department of Canadian Heritage, Centre of Expertise for Grants & Contribution	May 2018 to August 2018	Not a designated office

Date Modified:: 2024-04-04

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Registration - Consultant

Canadian Organization for Rare Disorders / Stephanie Levee, Consultant

Registration Information

Associated Communications

Version 3 of 3 (2022-11-14 to present)

Version 3 of 3 (2022-11-14 to present)

Subject Matters

Subject Matter Details

Policies or Program

Policies or Program, Regulation

Regulation

Communication Techniques

Government Institutions

Government funding

Client Contact Information

Client representative

Parent Company Information

Coalition Members Information

Individual, organization or corporation with a Direct Interest Beneficiary Information

Subsidiary Beneficiary Information

Consultant Firm and Address

Registration - Consultant

Canadian Organization for Rare Disorders / Stephanie Levee, Consultant

Version 3 of 3 (2022-11-14 to present)

Subject Matters

Subject Matter Details

Policies or Program

Policies or Program, Regulation

Regulation

Communication Techniques

Government Institutions

Government funding

Client Contact Information

Client representative

Parent Company Information

Coalition Members Information

Individual, organization or corporation with a Direct Interest Beneficiary Information

Subsidiary Beneficiary Information

Consultant Firm and Address

Canadian Organization for Rare Disorders

The following names have been used on or after July 2, 2008

Canadian Organization for Rare Disorders

Stephanie Levee, 3Sixty Public Affairs Inc. (Consultant)