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Volunteer Advocate

News

All media inquiries can be directed to Jennifer Stranges, Associate, Corporate Communications at mediarelations@cysticfibrosis.ca or by calling 1-800-378-2233 ext. 290.


Cystic Fibrosis Canada asks for more than hope
May 2, 2018

May 2, 2018 (TORONTO) – Cystic Fibrosis Canada (CF Canada) is launching a national campaign this May, Cystic Fibrosis Awareness Month, to call on the government to make life-changing medications accessible for those who need it. Currently, a life-changing medication called Orkambi has the potential to benefit 2,100 of the 4,200 Canadians who live with cystic fibrosis (CF). Unfortunately, without public funding, many people with CF cannot access it despite its approval by Health Canada and doctors prescribing it.

 

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Cystic Fibrosis Canada welcomes Kelly Grover as new Chief Executive Officer
April 24, 2018

TORONTO (April 24, 2018) — Cystic Fibrosis Canada’s (CF Canada) Board of Directors is pleased  to announce the appointment of Kelly Grover to the position of President and Chief Executive Officer (CEO) effective June 4, 2018.

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Quebecers with cystic fibrosis are suffering because they can’t get the medication they need
April 23, 2018

Cystic Fibrosis Canada (Quebec) calls on government to help protect the health of people living with this fatal disease.

April 23, 2018 (Montreal, QC) – Cystic Fibrosis Canada is urging the Quebec government to take action to protect the health of Quebecers living with cystic fibrosis by granting them access to the life-changing medication Orkambi.  

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Provinces deal another blow to Canadians living with Cystic Fibrosis
November 14, 2017

Toronto, ON (November 14, 2017) – Cystic Fibrosis Canada is extremely disappointed that provincial governments have decided not to negotiate the price of Kalydeco, an effective cystic fibrosis (CF) medication, for Canadians with CF who have specific mutations and could potentially benefit from this drug.  

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CYSTIC FIBROSIS CANADA BOARD OF DIRECTORS ANNOUNCES APPOINTMENT OF JEFFREY BEACH AND JENNIFER NEBESKY AS CO-INTERIM CEOs
October 16, 2017

TORONTO (October 16, 2017) — Cystic Fibrosis Canada’s (CF Canada) Board of Directors has announced that Jeffrey Beach, Chief Executive Director, and Jennifer Nebesky, Chief Marketing and Communications Officer, will lead the organization as Co-Interim Chief Executive Officers (CEOs). Their tenure will begin on November 6, 2017 following the departure of current CEO Norma Beauchamp. Jeffrey will oversee the regional activities of both staff and volunteers, and Jennifer will oversee the teams at the national office.

 

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Cystic Fibrosis Canada announces launch of free cystic fibrosis e-learning module
September 12, 2017

September 12, 2017 (Toronto) – It’s back to school season and thanks to a new educational resource from St. Michael’s Hospital, anyone can now easily upgrade their knowledge of cystic fibrosis (CF) to better help their patients, clients or loved ones.

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Cystic Fibrosis Canada Board of Directors Announces Resignation of CEO Norma Beauchamp
August 24, 2017

TORONTO (August 24, 2017) — Cystic Fibrosis Canada’s (CF Canada) Board of Directors has announced the resignation of Chief Executive Officer (CEO) Norma Beauchamp. Norma’s last day with the organization will be November 3, 2017.

“Norma has been a tireless advocate and leader for the cystic fibrosis community and for the work our organization does to support those living with CF,” said Mitch LePage, Chairman of the CF Canada Board of Directors. “The Board is grateful for her dedication and effort that has helped Cystic Fibrosis Canada make continued progress, and we are excited to see what this next chapter brings for all of us working to end CF.”

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New Data on Triple Combination Therapies Positive News for Canadians with CF
July 21, 2017

Cystic Fibrosis Canada is excited to hear that data from early stage clinical trials led by Vertex Pharmaceuticals Inc. resulted in significantly improved lung function in people with one F508del mutation and one minimal function mutation (F508del/Min).

The triple combination therapy uses a combination of ivacaftor (known as Kalydeco), Vertex’s new product tezacaftor, and a third compound to tackle the mutation of the CF gene, which is the underlying cause of cystic fibrosis (CF). This is the first data to demonstrate the potential to treat the underlying cause of CF in people with F508del/Min mutations, a severe and difficult-to-treat type of the disease.

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Cystic Fibrosis Canada Celebrates Newborn Screening for CF in Quebec
June 8, 2017

June 8, 2017 (Quebec) – CF Canada is overjoyed with today's announcement by Quebec’s Ministry of Health and Social Services that a screening program for CF in newborns will finally be implemented.

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Quebecers with cystic fibrosis denied access to medication that substantially improves their life
June 2, 2017

June 2, 2017 (Montréal, QC) ― As Cystic Fibrosis Awareness Month comes to an end, Cystic Fibrosis Canada is extremely disappointed to learn that those living with cystic fibrosis (CF) in Québec will not have access to lumacaftor/ivacaftor (ORKAMBI) – a life-changing medication – through the list of medications reimbursed by the Régie d’assurance maladie du Québec (RAMQ), because of the recent recommendation issued by the Institut national d’excellence en santé et en services sociaux (INESSS).

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