Last week the North American Cystic Fibrosis Conference (NACFC) took place online. It is the biggest CF conference in the world, covering everything from better ways to manage symptoms and treatments for CF, to updates on the treatment pipeline and the latest in lab research to develop new treatments. Belinda Cupid, Senior Impact Adviser at the Trust, shares her top five highlights from the Conference.
10,000 Black Interns programme participant Etienne discusses his time spent working at Cystic Fibrosis Trust - and why programmes to support Black representation are so important
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from our Director of Research, Dr Lucy Allen
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Today we have published the our first Research Impact Report. In this blog Dr Lucy Allen, the Trust’s Director of Research, explains how this report was developed, an overview of what it covers and how funding from the Trust has made, and will continue to make, an impact for people living with cystic fibrosis.
In the latest edition of CF Life, we shared Polly's story – the first baby in the world to be diagnosed with cystic fibrosis (CF) through an established newborn screening programme. She was born at Ipswich Hospital in part of the East Anglian region, which was the first region to set up a newborn screening service for CF, a model that was later adopted across the rest of the UK. We spoke to the pioneers behind the programme, and looked at how their work has impacted people with CF and changed the way support is provided to families.
Trust-funded researchers within our UK CF Innovation Hub partnership have published their work in the journal ‘Science’ about how M. abscessus is evolving in the lungs of people with CF to become more virulent, suggesting that changes may need to be made in the way this infection is managed.
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Rebecca Cosgriff, Director of Data and Quality Improvement
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It’s been over a year since the first lockdown was announced in the UK. It’s also been a year since an international collaboration of global cystic fibrosis (CF) Registries, led by the Cystic Fibrosis Trust, began monitoring coronavirus (COVID-19) in people with cystic fibrosis. In this blog, Rebecca Cosgriff, the Trust’s Director of Data and Quality Improvement, reflects on the swift actions taken by CF Registries worldwide, what we now know, and what the future holds for studying COVID-19 and cystic fibrosis.
Everyone with cystic fibrosis (CF) aged over 16 years will have now been offered both doses of the coronavirus (COVID-19) vaccine, but the roll-out has not been without its challenges. Research from the British Medical Journal has indicated that there is much greater vaccine hesitancy among people from some ethnic minorities. We spoke to 42-year-old Gullfiaz Hussain, who has CF, about his reflections on shielding, vaccine hesitancy within Black, Asian and minority ethnic (BAME) groups and his own experience of taking the jab.
