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Advocacy Posts

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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Funding decision for ORKAMBI™ Delayed

The Canadian Agency for Drugs and Technologies in Health (CADTH) announced today that the submission for ORKAMBI™ (lumacaftor/ivacaftor) will be reconsidered at an upcoming meeting…

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Advocacy in action: Rae-Anne’s story

My name is Rae-Anne Davidson. I am 28 years old and from Ayers Cliff, Quebec. I was diagnosed with Cystic fibrosis (CF) at the age…

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CF Awareness Day on Parliament Hill

On Tuesday May 10th2016, the Northern and Eastern Ontario Regional staff assembled in our nation’s capital on Parliament Hill for a wonderful day of advocacy…

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Advocacy in Action: Access to a Future

Not only can access to medicine mean life-changing results for those living with a rare disease, it can also make a world of difference for…

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Advocacy in Action: The Human Cost

John* has been taking Orkambi for the last two and a half years, starting as part of the clinical trial, rollover study and now through…

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