Our September Media Roundup

2022 UK CF Registry report is published

First up, the key findings from the 2022 UK CF Registry report have been published, with data collected from 11,148 people with CF in the UK. The report, which can be read on our website highlights the latest CF data – including 173 people with CF becoming parents. A huge thank you to everyone who consents for their data to be part of the registry.

You can read the registry report here.

Charity fundraiser walk

Colleagues from Alder King Property Consultants have completed a 28 mile walk over all of Bristol's 45 bridges in the city. They completed the challenge over two days in September in support of the Trust, which they have made their chosen charity of 2023.

Find out how you can get involved with fundraising here.

CFT research published in 'Nature' journal

Research published this month in well respected scientific journal 'Nature', revealed that methods used in Cystic Fibrosis Trust funded research into the bacteria Mycobacterium abcessus have been used to reveal new information about a medicine used to treat COVID-19. 

You can read more about the research here.

NICE committee meet to discuss modulator access

In October, NICE’s independent committee will meet to discuss the modulator drugs Orkambi, Symkevi and Kaftrio and make recommendations on whether they should be available on the NHS for people with CF who are not currently taking a modulator therapy, but who could benefit from them in the future. All evidence will be considered, including data from clinical trials, the real-world experiences of people with CF and their families and views of CF professionals. 

Check our website page for more information and watch our video with our Chief Executive and Medical Director.  

You can watch our latest Media Roundup video on any of our social media platforms, or by clicking this link: September Media Roundup