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Volunteer Advocate

Advocacy

Cystic Fibrosis Canada is a champion for cystic fibrosis patients, parents and families. From helping you get started on your grassroots advocacy journey to ensuring CF voices are represented in the highest offices of our nation.

As your national leader in cystic fibrosis advocacy, we defend your interests – the interests of the CF community – to carve the path towards longer, healthier lives for Canadians with cystic fibrosis.

Our History in Advocating for change

Since being founded in 1960 by parents, Cystic Fibrosis Canada has a more than 60 year track record of success in driving needed change for Canadians living with cystic fibrosis. We have pushed both federally and provincially over the years, always in partnership with the CF community, achieving successes such as needed amendments to the Income Tax Act in 2000; or the universal implementation of CF newborn screening (NBS) tests across Canada by 2017.

Today our work continues as we relentlessly fight to access the latest innovative CF medicines and voice our community’s needs during the global COVID-19 pandemic.

With the Community, for the Community

Our reach is wide and we are able to act with speed, expertise and strategy both federally and provincially, thanks to our presence in every province combined with our national network of advocacy volunteers.

Learn about our National Advocacy Network

Drawing on the expertise of our government relations team and the strength of our community, we bring together a network of local and international partners, like clinicians, researchers, health charity coalitions and other CF organisations, to meaningfully influence policy matters impacting the CF community in Canada.

Above all, Cystic Fibrosis Canada cares deeply about creating a brighter future for you and for all Canadians impacted by cystic fibrosis. Together, we will keep pushing further to create a future where cystic fibrosis is not a life limiting disease and every Canadian living with CF can experience and enjoy everything that life has to offer.

We Champion Access to Life-Changing CF Medicines

Access to innovative, life-changing CF medicines is a top priority for Cystic Fibrosis Canada and the CF community. There is a life-changing medicine, Trikafta, that could change the lives of 90% of Canadians living with cystic fibrosis and dramatically reduce deaths and hospitalisations according to a recent study we funded. It is available in other countries, but not here in Canada - yet.

Cystic Fibrosis Canada works to improve access to life-changing and life-sustaining medicines by:

  1. Getting modulators including Trikafta funded in all provinces and territories. We are also developing an access strategy for private insurance.
  2. Partnering to drive system change by working with groups like the Health Charities Coalition of Canada (HCCC), Best Medicines Coalition (BMC), the Canadian Organization for Rare Disorders (CORD), CF Get Loud, the Canadian CF Treatment Society, and other community allies partners to create a regulatory and reimbursement environment in Canada that provides access to new innovative therapies. This includes developing a funding strategy for drugs for rare diseases.
  3. Building the evidence base by engaging our community in research initiatives, such how much it costs to live with CF, to better understand our community’s access needs and to inform our work.

Learn more about Getting Access to CF Medicines

During the COVID-19 pandemic, we have advocated for access to COVID-19 vaccines for Canadians living with cystic fibrosis as well as for other needs of the CF community.

See COVID-19 Information for the CF Community

Get Involved

Cystic Fibrosis Canada empowers and equips you to drive change that improves the lives of people living with cystic fibrosis.

Current campaigns, programs and projects you can get involved in include:

If you would like to discuss other ways you can help or how we can support you in your CF advocacy journey, we’re listening! Please email us at advocacy@cysticfibrosis.ca.

Stay Informed

Register now to receive The Advocacy Brief e-newsletter direct to your inbox for the latest in CF advocacy news, ways you can help and stories from our CF advocate community.