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Volunteer Advocate
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Call for participants: May Awareness 2017

May is cystic fibrosis awareness month and this year, Cystic Fibrosis Canada wants Canadians to know how important affordable access to medicine and care is for those living with cystic fibrosis and all rare diseases. As many of the people in our community know, medicine continues to advance and life-changing drugs are becoming available or are in development. The cost of these drugs, however, can make it impossible for those who need them to access them.

We want you!

We are creating a campaign that will engage you, our community, to sign a petition urging provincial governments across Canada to provide coverage for a much needed drug for cystic fibrosis patients. Currently, Orkambi is being prescribed by doctors to patients across Canada, but the high cost of this drug makes it challenging for people to get without provincial coverage.

Our campaign is set to launch in May and is currently in late developmental stages. As we finalize the details, it’s necessary we find people who are willing and able to take part in it to make our voices heard. People like you. If you’re interested in potentially participating, read on!

What’s Involved

What: We are looking for people who would be willing to participate in creating a video or photos for the campaign (either with your own device or at a photo/video shoot).

Who: Anyone living with, loving someone or touched by cystic fibrosis in Canada. This could be parents, friends, colleagues, medical professionals, those living with CF young and old, and more.

Where: All across Canada! We want to capture a true representation of the community from coast to coast so it’s important we get people from all provinces and territories.

*If you are in or can travel to the Greater Toronto Area and would be interested in being a part of a formal shoot in mid-April, please let us know.

Other notes: The campaign may include family members of people with cystic fibrosis as well as people with cystic fibrosis. We may be recreating some emotional moments, some of which may be emotionally challenging. If you are open to being a part of this, please let us know. Comfort and safety is our top priority for this element of the campaign, and we are working with professional directors, crews and photographers to ensure this is top of mind at all times.

Get in Touch

If all of this sounds like something you want to be a part of, please email public-relations@cysticfibrosis.ca and include:

  1. First Name
  2. Last Name
  3. Age
  4. Sex
  5. Any Special notes – For example, are you able to participate in a video/photo shoot in Toronto? Are you a lung transplant recipient? Have you been prescribed Orkambi? Did you benefit from access to Kalydeco? Do you have a powerful story you want to share? If there is anything you want us to know, be sure to include it.

We will be sure to keep everyone in the loop who reaches out to us on campaign progress, participation needs and more, and we thank everyone who is interested in helping us make the voice of our community heard!