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Volunteer Advocate

News

All media inquiries can be directed to mediarelations@cysticfibrosis.ca or by calling 1-800-378-2233.


COVID-19 update from Kelly Grover
March 16, 2020

Cystic Fibrosis Canada is closely monitoring developments relating to COVID-19 in Canada. We understand this is a time of concern for many members of our community. CF Canada President & CEO Kelly Grover provides an update...

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Proposed regulatory changes denying access to life-saving drug for thousands of Canadians
March 11, 2020

Cystic Fibrosis Canada leaders and patient advocates are meeting with government officials in Ottawa, and across the country, to call for changes to proposed regulatory reforms that are blocking access to a new breakthrough drug to treat cystic fibrosis.

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Update about COVID-19
March 4, 2020

While public health officials are actively monitoring the risk of the new coronavirus, COVID-19, Cystic Fibrosis Canada has consulted with members of the CF clinical community about its potential impact on people living with cystic fibrosis.

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Cystic Fibrosis Canada Tells Government to Halt Implementation of Regulatory Changes
February 21, 2020

Toronto (February 21, 2020) - Cystic Fibrosis Canada has called on the federal government to halt implementation of regulatory changes to the Patented Medicines Price Review Board (PMPRB). Read our submission to the PMPRB, titled Submission on Protecting Canadians from Excessive Drug Prices: Proposed Guidelines to the Patented Medicines Regulations.

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Holiday wishes are different for people living with cystic fibrosis
November 28, 2019

TORONTO (November 28, 2019) - Cystic Fibrosis Canada is launching their fourth annual Year End campaign featuring four CF families and their wishes for the holiday season. The campaign helps raise vital funds for CF research, care and advocacy initiatives to help Canadians with CF live longer and healthier lives. The campaign will run from November 28th to December 31st, and all donations made on December 3rd (Giving Tuesday) will be matched up to $30,000.

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Cystic Fibrosis Canada asks Canadians to do whatever it takes
October 2, 2019

TORONTO (October 2, 2019) – Cystic Fibrosis Canada is asking Canadians and candidates to do whatever it takes to improve access to potentially life-changing medicines for rare diseases. Through an online petition during the 2019 federal election season, Cystic Fibrosis Canada is calling on candidates to prioritize the creation of a rare disease strategy to improve access to drugs for rare diseases.

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Siemens celebrates $2 million in donations to Cystic Fibrosis Canada
June 27, 2019

TORONTO (June 27, 2019) – Today, Siemens celebrates the milestone of $2 million in accumulative giving over the course of its more than 20 year partnership with Cystic Fibrosis Canada. Every June, the company runs a fundraising campaign to support cystic fibrosis (CF) research, advocacy and care. 

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CYSTIC FIBROSIS CANADA CELEBRATES 15TH ANNIVERSARY OF NATIONAL FUNDRAISER
May 1, 2019

TORONTO (May 1, 2019) – Cystic Fibrosis Canada is celebrating the 15th anniversary of its signature fundraising event, The Walk to Make Cystic Fibrosis History. Each year, the Walk is held on the last Sunday in May, Cystic Fibrosis Awareness Month. This year’s Walk will take place on Sunday, May 26 in over 70 communities across Canada.

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Inkbox Releases Cystic Fibrosis Inspired Temporary Tattoo Collection
March 5, 2019

Cystic Fibrosis Canada is excited to announce that temporary tattoo company inkbox has released a collection inspired by cystic fibrosis (CF) and the upcoming film Five Feet Apart. 50 percent of sales will be donated to the Cystic Fibrosis Individualized Therapy program (CFIT), a research partnership with SickKids.

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SASKATCHEWAN, ALBERTA AND ONTARIO ESTABLISH CRITERIA TO PRESCRIBE ORKAMBI
February 27, 2019

TORONTO (February 27, 2019) – The governments of Saskatchewan, Alberta and Ontario have announced prescribing criteria for pediatric patients to qualify for public coverage of ORKAMBI on an exceptional, case-by-case basis. This announcement is the result of diligent advocacy work by Cystic Fibrosis Canada and the Canadian cystic fibrosis community. The decision comes three years after Health Canada approved the medication for use in Canada. 

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