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Advocacy Posts

Why Canada Needs A Rare Disease Strategy

Approximately, one in every 3,600 children born in Canada has CF, making CF a rare disease. While each rare disease affects only a very few…

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Finding my role in the CF Community

Hello, my name is Jim Best and I am a 34-year-old living with Cystic Fibrosis. I am sitting and writing this realizing how hard it…

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Advocating for better access to medications

Most Canadians don’t think about or need to know how a new medicine is discovered, developed, approved and funded. For Canadians with rare disorders, however,…

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Advocating for Cystic Fibrosis

Cystic fibrosis (CF) is the most common fatal genetic disease affecting Canadian children and young adults. Currently, there is no cure. Approximately, one in every…

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Call for participants: May Awareness 2017

May is cystic fibrosis awareness month and this year, Cystic Fibrosis Canada wants Canadians to know how important affordable access to medicine and care is…

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An Update on ORKAMBI

On Monday, we shared with you an update on CADTH’s recommendation that Vertex’s drug ORKAMBI not be reimbursed. The response from the community has been…

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ORKAMBI™: WHERE ARE WE NOW?

Early this summer, people with cystic fibrosis were disappointed to learn they are going to have to wait even longer for access to a new…

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ORKAMBI™ Update: Letter from Vertex Pharmaceuticals

We have an  ORKAMBI™ update; please read this letter Cystic Fibrosis Canada received from Vertex regarding the CADTH reconsideration. Cystic Fibrosis Canada is committed to…

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Advocacy in action: Simone’s story

My name is Simone McFee. I’m a 25-year-old woman from BC and I have cystic fibrosis (CF). As I’ve gotten older, this progressive disease has…

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