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Advocacy Posts

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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Advocacy in Action: Abby

Starting our Advocacy in Action series is the story of 25-year-old B.C. resident, Abby. Both Abby and her twin sister Simone have cystic fibrosis (CF),…

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ADVOCACY IN ACTION: Access to Medicine

The Drug Approval Process in Canada Getting a drug from a lab all the way to patients who can benefit from it is a long…

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Making CF History: Advocating for Our Community

One of our roles as a non-profit is to advocate for you, our community. Since 1960, we’ve been committed to ensuring people with CF, caregivers…

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Newborn Screening for Cystic Fibrosis in Canada Shows Benefits

Pictured above: Amelia Ann Steeves from Victoria, BC, who was born in the fall of 2011 and diagnosed with CF by newborn screening, shown in…

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