Je m’appelle Kelly Ann Quinlan et j’ai 19 ans. J’ai reçu un diagnostic de fibrose kystique à la naissance. Michael, mon frère de 24 ans, est également atteint de fibrose kystique, ce qui pose un problème puisque nous vivons sous le même toit et que nous devons, dans une certaine mesure, vivre séparément. Nous sommes très près de nos parents et, parfois, ils ont du mal avec les tâches supplémentaires et le ménage constant dû au fait d’élever deux enfants FK.Pour en savoir plus
This is a time of unprecedented change for the Canadian cystic fibrosis community. There are now promising treatments that are creating positive changes for Canadians living with this disease. Yet for others, cystic fibrosis continues to impose a heavy burden. Cystic Fibrosis Canada is determined to see brighter futures ahead for all Canadians living with cystic fibrosis, including those who will not benefit from the lifechanging treatment Trikafta. We are investing in research to ensure there are promising treatments for all Canadians impacted by cystic fibrosis. As well, we are ensuring that clinical trials for new treatments reach Canada so that no one is left behind in our pursuit of longer and healthier lives for everyone living with cystic fibrosis.
Learn more about our mission work that is helping to change the future of life with cystic fibrosis in Canada:
Research is one of the most impactful ways that Cystic Fibrosis Canada can continue to change the future of cystic fibrosis, ensuring that no one is left behind as we push for longer and healthier lives for all Canadians living with this disease.
Access to Medicines
Canada’s patchwork of public and private drug programs present access challenges that are standing in the way of Canadian’s with cystic fibrosis accessing needed drugs. There is uncertainty in some jurisdictions about who can gain access, and hurdles regarding private insurance. Cystic Fibrosis Canada continues to lead advocacy activities to ensure that all who can benefit from needed drugs can access them.
Improving the quality of care, for longer and healthier lives
Cystic Fibrosis Canada has a long history of ensuring there is quality cystic fibrosis care available in Canada. We do this in many ways including accrediting cystic fibrosis clinics, encouraging high caliber and consistent cystic fibrosis care across the country, bringing new clinicians to this specialized field and more.
Measuring, monitoring, and leading the disease
Cystic Fibrosis Canada is one of very few health charities to have a patient registry. Our Canadian Cystic Fibrosis Registry is an important database that tracks health data on all consenting cystic fibrosis patients in Canada. With the data in the Canadian Cystic Fibrosis Registry, Cystic Fibrosis Canada, patients, clinicians, and researchers can monitor disease patterns, better understand clinic populations, fuel research, and respond to emerging healthcare issues.
Listening to, supporting, and connecting our community
Cystic Fibrosis Canada provides resources and support services to Canadians with cystic fibrosis, their families, and communities, helping them to navigate the complexities of the disease, with a sense of empowerment and community behind them.