Advocacy Posts
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…
Read MoreFunding 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…
Read MoreAdvocacy 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…
Read MoreCF 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…
Read MoreAdvocacy 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…
Read MoreAdvocacy 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…
Read MoreAdvocacy 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),…
Read MoreADVOCACY 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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