Program priorities at Cystic Fibrosis Canada
We’re working to urgently advance cystic fibrosis knowledge, advocacy and care, so that no one with cystic fibrosis is left behind.
Cystic fibrosis research
New cystic fibrosis therapies are helpful, but many people are without effective treatment and there is no cure. CF is still a fatal disease and the burden for many Canadians remains high. Over our history, we have invested nearly $210 million in cystic fibrosis research, aligning with our community’s priorities for where they need their health improved. Research is essential in taking us further. To lessen the burden. To find new treatments. To help our community live without limits.
Cystic fibrosis clinical trials
Clinical trials make it possible to get new cystic fibrosis therapies approved in Canada. They help provide evidence for new therapies and translate research knowledge into the best possible treatments available to our cystic fibrosis community. Our clinical trials network co-ordinates the work across Canadian sites, making it easier for trials to be conducted in Canada and more appealing for pharmaceutical companies to set them up here. This means Canadians with cystic fibrosis can have better access to clinical trials, often getting early access to medications or therapies before they are approved or funded. Our network also has strong collaboration with other global cystic fibrosis partners, to ensure results from trials for people with CF are impactful for people living with CF, right here in Canada and around the world.
Clinical Trials + Trial Finder
Cystic fibrosis healthcare
Ensuring people have access to the best care is very important for the health of our community. Our Healthcare Advisory Council (HAC) represents a mix of people from cystic fibrosis care teams, such as physicians, nurses, social workers, physiotherapists, pharmacists, a person living with cystic fibrosis and a caregiver. This Council helps us set priorities and plans to support the best clinical care across Canada. We work with our HAC to develop resources for people with cystic fibrosis and providers, and the national standards of care to support the delivery of care by Canadian CF clinics.
Our Healthcare ProgramCystic fibrosis information and support
We connect with our cystic fibrosis community through various channels, including our Elevate program, to understand their needs and to develop and share resources and learning and support opportunities. Our Helpline provides immediate non-urgent information and support to Canadians with cystic fibrosis on issues that are important to them such as access to treatments, financial support and healthcare information. We are also working on ways to create more connections for our community, to reduce the emotional impact of the disease.
Living with CFAdvocacy: increasing access to CF drugs and reducing financial burden
We recently led the largest advocacy activity for cystic fibrosis in Canada so that new and needed therapies, such as Trikafta, became available in this country. Now, every province and territory is funding the drug for eligible Canadians. There are still significant access barriers due to limitations and eligibility in private and public drug funding. We will continue to use our strength in advocacy to resolve these issues and others.
Become an Advocate
Canadian Cystic Fibrosis Registry
Our Canadian Cystic Fibrosis Registry was created in the 1970s with the goal of monitoring important clinical trends and has played an invaluable role in helping to improve the quality and length of life of people with cystic fibrosis. Registry data helps us and our healthcare and research partners monitor disease patterns, better understand clinic populations, fuel research and respond to emerging healthcare issues.
Learn moreHow can I help?
Our important programs have been steadily improving and serving more Canadians since our founding 65 years ago. We’ve relied on the valuable support of our community to go further for people living with cystic fibrosis. You can help strengthen these programs by donating, volunteering or getting involved with Cystic Fibrosis Canada in any way that meets your needs.
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