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Volunteer Advocate

Advocacy

As part of our advocacy efforts, Cystic Fibrosis Canada works with members of our community to educate and train them on how to advocate to elected and non-elected officials regarding important CF related topics. Our current advocacy efforts are largely focused on access to medicine as well as championing national pharmacare and a national rare disease strategy. Canadians with CF need access to newly discovered drugs and therapies which can cost hundreds of thousands of dollars per patient per year, unattainable without support from public and private health plans.

In recent years, advocacy efforts have resulted in such achievements as newborn screening for CF, which is now in practice for all births in all provinces across Canada, and essential to early diagnosis and intervention. Our current efforts have led to greater access to medications such as Orkambi® and Kalydeco®, which have had remarkable positive effects on lung function for some patients with specific types of genetic mutations that cause CF, but there is much work to be done to ensure access as new, better and more widely applicable therapies come forward.

ASK FOR CF RELATED INFORMATION

The CF Canada advocacy team also runs an information and referral program. You can contact our   Information and Referral desk for all cystic fibrosis related information requests. Or check out our online resources. We are here to help you.

Contact us today: email advocacy@cysticfibrosis.ca or call 1800-378-2233

Some of the types of requests we help with are:

 BECOME AN ADVOCATE

CF Advocates can have a significant impact on the way CF issues are addressed in Canada by all levels of government. Working with CF Canada, advocates build relationships with elected and non-elected officials in order to increase support for programs, services and policies that can improve the quality of life for people with cystic fibrosis.

For more information, contact advocacy@cysticfibrosis.ca.