Archive for March, 2019
A Forum on Rare Diseases in Quebec
On February 22, in Montreal, Cystic Fibrosis Canada, in collaboration with the Alliance des patients pour la santé and the Regroupement québécois des maladies orphelines (RQMO),…
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Sandy Stevens: I needed answers and the answer was advocacy
My 12-year-old daughter who has Cystic Fibrosis (CF) has been in the hospital many times with longer stays each time. They’re trying all the support…
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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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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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