Registration - Consultant

Canadian Organization for Rare Disorders / Johanne Chambers, Consultant

Registration Information

Client name: Canadian Organization for Rare Disorders
Lobbyist name: Johanne Chambers, Consultant
Initial registration start date: 2020-03-10
Registration status: Active
Registration Number: 942584-366137

Associated Communications

Total Number of Communication Reports: 0

Monthly communication reports in the last 6 months: 0

Version 4 of 6 (2021-07-15 to 2022-11-14)

Registration versions:

Version 4 of 6 (2021-07-15 to 2022-11-14)

Lobbying Information

Subject Matters

Health
Industry
Science and Technology
Taxation and Finance

Subject Matter Details

Policies or Program

Engagement with officials on federal policies to ensure timely access to treatments for rare disorders and to promote research and development related to treatments for rare disorders.
Engagement with officials on issues related to rare disease policies in the context of the development of a national pharmacare program.
Engagement with officials regarding the development of a national strategy on drugs for rare diseases.

Regulation

Amendments to the Patented Medicines Regulations published in Canada Gazette, Part II on August 21, 2019, June 10, 2020 and January 20, 2021.
Patented Medicines Regulations and draft guidelines released by the Patented Medicines Price Review Board.
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

Health Canada (HC)
House of Commons
Innovation, Science and Economic Development Canada (ISED)
Patented Medicine Prices Review Board (PMPRB)
Senate of Canada

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

Johanne Chambers | Public offices held

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

Telephone number: 613-800-8340

Consultant Firm and Address

Firm: 3Sixty Public Affairs Inc. / 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	2024-05-17	current
Canadian Organization for Rare Disorders	2020-03-10	2024-04-30

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
Negotiator Indian and Northern Affairs Canada, Negotiations East Branch	2007 to 2014	Not a designated office
Lawyer Department of Justice, Department of Legal Services for INAC	2006 to 2007	Not a designated office
Senior Policy Analyst Indian and Northern Affairs Canada, Treaties, Research, International and Gender Equality Branch	2004 to 2006	Not a designated office

List of Public Offices Held
Position	Period Held	Last Date Designated Public Office Held
Negotiator Indian and Northern Affairs Canada, Negotiations East Branch	2007 to 2014	Not a designated office
Lawyer Department of Justice, Department of Legal Services for INAC	2006 to 2007	Not a designated office
Senior Policy Analyst Indian and Northern Affairs Canada, Treaties, Research, International and Gender Equality Branch	2004 to 2006	Not a designated office

Date Modified:: 2024-04-04

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Registration - Consultant

Canadian Organization for Rare Disorders / Johanne Chambers, Consultant

Registration Information

Associated Communications

Version 4 of 6 (2021-07-15 to 2022-11-14)

Version 4 of 6 (2021-07-15 to 2022-11-14)

Subject Matters

Subject Matter Details

Policies or Program

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 / Johanne Chambers, Consultant

Version 4 of 6 (2021-07-15 to 2022-11-14)

Subject Matters

Subject Matter Details

Policies or Program

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

Johanne Chambers, 3Sixty Public Affairs Inc. / 3Sixty Public Affairs Inc. (Consultant)