Lobbying Information
Subject Matters
- Health
- Justice and Law Enforcement
- Research and Development
- Science and Technology
- Taxation and Finance
Subject Matter Details
Grant, Contribution or Other Financial Benefit, Policies or Program
- In terms of research and development, we lobby for support of cystic fibrosis research initiatives that improve the health and wellness of Canadians living with cystic fibrosis.
- In terms of science and technology, we work toward the development of precision and personalized medicines that target the basic defect of cystic fibrosis. We are exploring how the federal government may support these efforts through partnership and funding.
- Increased federal investment in health-related research. We worked with the Health Charities Coalition of Canada (HCCC) to draft content for a press release urging the federal government to invest more in basic science in Canada.
Policies or Program
- Encouraging the development of a rare disease strategy in Canada (similar to the policies for rare diseases in Europe and the United States).
- Improving access to precision medicines for Canadians with cystic fibrosis and other rare diseases.
- With respect to disability, we advocate for recognition of and supports for people with episodic disabilities.
Regulation
- Advocating to stop the regulatory changes to the Patented Medicines Price Review Board (PMPRB).
Communication Techniques
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Written communication
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Oral communication
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Grass-roots communication
Government Institutions
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Canada Revenue Agency (CRA)
-
Canadian Institutes of Health Research (CIHR)
-
Finance Canada (FIN)
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Health Canada (HC)
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House of Commons
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Patented Medicine Prices Review Board (PMPRB)
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Prime Minister's Office (PMO)
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Public Health Agency of Canada (PHAC)
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Senate of Canada
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Statistics Canada (StatCan)
In-house Organization Details
Description of the organization's activities
Cystic Fibrosis Canada is a health charity that supports cystic fibrosis (CF)-related research and care with the goal of finding a cure or effective control for CF, and educates the public about the disease.
Responsible officer name and position during the period of this registration
Kelly Grover,
President and Chief Executive Officer
Organization's membership or classes of membership
Cystic Fibrosis Canada has 50 volunteer chapters across Canada. The majority of our members have a personal connection to cystic fibrosis.
Government funding
End date of the last completed financial year:
2019-12-31
List of Government Funding
|
Government Institution
|
Funding Received in Last Financial Year
|
Funding Expected in Current Financial Year
|
|
BC Ministry of Health
|
$100,000.00
|
Yes
|
|
British Columbia Gaming
|
$50,000.00
|
Yes
|
|
British Columbia Ministry of Health
|
$80,000.00
|
Yes
|
In-house Organization Contact Information
Address:
2323 Yonge Street
Suite 800
Toronto, ON M4P 2C9
Canada
Telephone number:
416-485-9149
Ext.
238
Lobbyists Details
Employees who lobby for the organization
- Kelly Grover,
CEO |
No public offices held
- Olivier Jérôme,
Regional Executive Director | Québec |
No public offices held
- Eric Mariglia,
Associate, Government Relations and Advocacy |
No public offices held
- Kim Steele,
Director, Government and Community Relations |
No public offices held
- John Wallenburg,
Chief Scientific Officer |
No public offices held
