Forming The Global Registry Harmonization Group, experts including those from the Cystic Fibrosis Trust have written in the Journal of Cystic Fibrosis about how people with cystic fibrosis (CF) need vaccine distribution strategies that work, are aggressive, and follow the science.
Although we still can’t meet in person for fundraising events, Sarah and her friends found a virtual way to run together as a team. Over the Easter weekend, over 70 runners across the UK (and internationally!) took on a half marathon to raise money for Lucy, Sarah’s 17-month-old daughter who has cystic fibrosis (CF). Here, Sarah reflects on organising an event during lockdown, her highs and lows, and her tips for training during a pandemic.
This year, our annual UK Cystic Fibrosis Conference (UKCFC) will be held entirely online for the first time, on Wednesday 12 May 2021. The conference is an informal opportunity for the CF research community to share their results, generate new ideas and spark interest in new collaborations. Read on to find out about some of the exciting research being presented at UKCFC this year.
When Tim was diagnosed with cystic fibrosis (CF) in 1971, his parents were told he would only live to his teenage years. Instead, he celebrated his 50th birthday earlier this year. Tim, who has the double Delta F508 mutation, works full time as a Communications Manager in South London, where he lives with his wife, Katie, and 13-year-old son, Felix. In this blog, Tim takes a look back on how CF treatments have evolved over the last 50 years and reflects on key moments that changed his life, including cross-infection risks and Kaftrio.
Transition from paediatric to adult care is different for everyone with cystic fibrosis (CF). Cicely's transition didn't quite go to plan but here she reflects on the experience and the great work she has done with her new CF team.
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Luci O'Reilly, Clinical Trials Involvement Coordinator
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For the last three years, we have been asking the cystic fibrosis (CF) community for their thoughts on clinical trials via an annual survey, to understand the opportunities available and people’s perceptions of taking part. Luci O’Reilly, Clinical Trials Involvement Coordinator, talks through the results from the 2020 survey, the bigger picture emerging and what the future may hold.
