March 2026

Rare Disease Campaign: Raise your voice and raise awareness

Rare Disease Day around the world is February 28. The nearly three million Canadians who live with a rare disease face long journeys to diagnosis, limited treatment options, and the loneliness of feeling they are not heard.

About 30,000 Canadians live with pulmonary fibrosis, which is considered a rare disease. It’s time to raise your voice and let others know what you need. From February 28 until March 31, join our Rare Disease Campaign and let your voice be heard.

Together, our voices have impact

Explore CPFF’s new Advocacy hub. Join others across Canada and take part in campaigns driving real progress.

Advocacy campaigns

As our Tackle the Crackle© Campaign continues to build awareness, our 2026 Rare Disease Campaign will turn up the volume on oxygen access inequities in Canada and empower you with tools to help drive change.

Oxygen is Medicine Campaign.  Access to home oxygen therapy in Canada shouldn’t depend on where you live. Canada needs universal standardized access NOW. Together, we’re urging health leaders across Canada to step up. Learn what needs to change and be part of it.

Take action with us

Help us change oxygen therapy policies in Canada. Visit our Oxygen Action Centre where you can sign our petition, contact your elected officials, attend advocacy events, make a donation and stay informed.

More about the Rare Disease Campaign

• A study shows oxygen therapy saves healthcare costs. Learn more.
• CPFF will lead a national media push to increase awareness. Read our national news release.
• Visit our O₂ Wall, where we share the realities of oxygen therapy.
• Send a tribute or memorial e-card to the RARE individuals in your life.

Listening to every voice: Help shape the future of support for our community

By Mark Ashcroft, Board Chair, Canadian Pulmonary Fibrosis Foundation

At the Canadian Pulmonary Fibrosis Foundation (CPFF), everything we do begins with one guiding principle: listening.

This mission is deeply personal to me. As someone who lived with idiopathic pulmonary fibrosis (IPF), I experienced firsthand how critical access to drug therapy and oxygen was in my journey. Eventually, my disease progressed to the point where I needed a double lung transplant. I am here today because of that care; and because organizations like CPFF listened to the needs of patients like me. I am profoundly grateful.

That is why I am asking you to take a few minutes to complete the CPFF Patient and Caregiver Survey. This survey is one of the most important tools we have. It helps us understand your journey—from diagnosis and access to care, to oxygen, drug therapies, and the supports you need to live well. Your experiences directly shape CPFF’s programs, services, and advocacy, and help ensure our strategic priorities reflect what our community truly needs.

When you share your voice, you help ensure that no one is overlooked. You strengthen our ability to advocate and to provide meaningful support.

On behalf of the CPFF Board of Directors, and as a patient myself, thank you. Your voice matters; and CPFF is listening.

Emerging treatments offer hope and improved quality of life

More treatment options on the horizon as several drugs in development are getting closer to being available.

Pulmonary fibrosis experts agree that there have never been so many clinical trials of potential new treatments for the disease. Some of them have completed, or are entering, Phase 3 in their investigations – the final stage of a clinical trial before submission for approval by Health Canada.

Learn more about the drugs in development that we are tracking, as well as other promising research.

• Nerandomilast
• Tyvaso
• Haduvio

Read More