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Archive for July, 2018

The hope for Orkambi is strong all across Canada

Summer time – it brings so much hope for our family! The hope for new experiences at camp, hope for sunny days at the beach,…

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ADVOCACY IN ACTION: Updates on BC residents lose access to life-changing Cystic Fibrosis medication

Dear Friends, I am writing to thank you for your support in my struggle to get coverage so that I can stay on the medicine…

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ADVOCACY IN ACTION: BC residents lose access to life-changing cystic fibrosis medication

Province doesn’t cover cost, private insurance cut them off   As a result of swift and unexpected changes to their health insurance coverage, two BC…

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Why Canada Needs A Rare Disease Strategy

Approximately, one in every 3,600 children born in Canada has CF, making CF a rare disease. While each rare disease affects only a very few…

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Finding my role in the CF Community

Hello, my name is Jim Best and I am a 34-year-old living with Cystic Fibrosis. I am sitting and writing this realizing how hard it…

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Advocating for better access to medications

Most Canadians don’t think about or need to know how a new medicine is discovered, developed, approved and funded. For Canadians with rare disorders, however,…

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Advocating for Cystic Fibrosis

Cystic fibrosis (CF) is the most common fatal genetic disease affecting Canadian children and young adults. Currently, there is no cure. Approximately, one in every…

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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…

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An Update on ORKAMBI

On Monday, we shared with you an update on CADTH’s recommendation that Vertex’s drug ORKAMBI not be reimbursed. The response from the community has been…

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