Cystic Fibrosis Canada / Fibrose kystique Canada
Registration:
31
of
31
(2024-06-06
to
present)
Details Regarding the Identified Subject Matter
Subject matters
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Details
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Categories
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Health
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Advocating to stop the regulatory changes to the Patented Medicines Price Review Board (PMPRB).
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Regulation
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Health
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Encouraging the development of a rare disease strategy in Canada (similar to the policies for rare diseases in Europe and the United States).
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Policies or Program
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Health
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Improving access to precision medicines for Canadians with cystic fibrosis and other rare diseases.
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Policies or Program
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Research and Development
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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.
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Grant, Contribution or Other Financial Benefit, Policies or Program
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Research and Development
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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.
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Policies or Program, Grant, Contribution or Other Financial Benefit
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Science and Technology
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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.
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Grant, Contribution or Other Financial Benefit, Policies or Program
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Labour
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With respect to disability, we advocate for recognition of and supports for people with episodic disabilities.
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Policies or Program
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