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Volunteer Advocate


Cystic Fibrosis Canada calls on community to help reimagine research strategy
May 7, 2021

Cystic Fibrosis Canada calls on community to help reimagine research strategy  

From time spent in hospital to daily at-home treatments and therapies to transplants, no one understands the realities of cystic fibrosis better than those living with it and their caregivers. That is why Cystic Fibrosis Canada is asking our community to provide their input and experiences with the disease via a survey to help inform the future of our work 

The first of these opportunities will support the development of Cystic Fibrosis Canada’s new research strategy. As outlined in the 2020-2023 Strategic Plan, this strategy will advance research on priority health needs by viewing our work within the global CF-research context. We will also focus our research to have a greater potential for near-term impact and want to prioritize innovative ways to support the people living with cystic fibrosis who cannot or do not benefit from modulators – a matter of great importance to us. 

“We’ve made a commitment at CF Canada that our work will be guided by and informed by people living with cystic fibrosis,” said Dr. John Wallenburg, Chief Scientific Officer, Cystic Fibrosis Canada. “With that in mind, we are now seeking input from the CF community to help us understand their priorities on research including what should be improved or considered as an area of focus. We want to work with the first-hand experts, the people living with and directly impacted by this disease to reimagine what Cystic Fibrosis Canada’s research strategy will look like in years to come. 

In addition to the survey, Cystic Fibrosis Canada will virtually bring together scientists, clinical researchers, and members from the cystic fibrosis community to participate in an interactive, facilitated workshop thelp confirm the Canadian patient research priorities.Those who respond to the survey will be considered for participation in the workshop. An update on CF Canada’s new research strategy will be provided this fall. 

To learn more about this study or to participate in our short, 10-minute survey, visit here. The survey will be open until May 21. 

Cystic Fibrosis Canada has been a trailblazer in funding cystic fibrosis research that has advanced knowledge of the disease and has been a driving force behind discoveries that have changed the way we treat CF in Canada and globally. CF Canada has invested more than $262 million into research and healthcare to date.  

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