CF LIVE

We're bringing together the cystic fibrosis (CF) community, people involved in CF care, researchers and others with an interest in CF for a series of online events. Find out more about CF LIVE and register for the next event.

Through CF LIVE, expert panels will share the latest information and updates from the world of cystic fibrosis. We’ll cover a wide range of subjects and you’ll have the opportunity to be part of the discussion by submitting questions. If there’s a topic you’d like us to cover at a future CF LIVE, please email us at conference@cysticfibrosis.org.uk


Watch recordings of previous events

9 February 2022 - Money Matters – Financial support for students with CF -  At this CF Live we explored the support available for students in further and higher education who are living with CF. This will included an outline of the options and support available from education providers, Social Workers and the Cystic Fibrosis Trust. Watch the recording.

25 January 2022 - The pandemic in numbers: changes in CF in a landmark year - This event looked at how the pandemic affected people with cystic fibrosis, their clinical teams and the UK CF Registry. We also looked at whether in all the disruption caused by Covid-19, whether it was possible to glimpse any other changes in cystic fibrosis triggered by the reimbursement of Kaftrio. We also took at look at our current Research Priorities Refresh. Watch the recording.

20 January 2022 - Kaftrio availability for 6-11 year olds - At this CF Live we talked about the news that Kaftrio  is now licensed for use in eligible children aged 6-11 years old across the UK. During this session we answered your questions on eligibility, explained how Kaftrio works, and talked about what's happening for people who aren’t eligible for this drug. Watch the recording. 

25 November 2021 – Transplants and CF – Our panel provided expert information and reassurance about the transplant process through advice and shared experiences, as well as busting some common myths. There was also an update on our current transplant campaigning work. Watch the recording.

6 October 2021 – Spotlighting the development of new treatments for CF, inclusive of all mutations - At this CF LIVE you’ll hear about laboratory studies developing treatments to target alternatives to the CFTR protein and get an update on the (literally) cutting edge world of gene editing. If successful these approaches could lead to more effective treatments, inclusive of those who are not able to take Kaftrio or Kalydeco. Watch the recording.

8 September 2021 – CF STORM: The ground-breaking clinical trial set to change lives - CF Trust staff were joined by members of the CF STORM Trial Management Group and Trial Coordinators who explained more about this innovative and exciting trial, which aims to find out if people receiving Kaftrio can safely start to reduce the number of treatments they have to manage as part of their daily healthcare routine. Watch the recording.

24 February 2021 – Involvement: the future of cystic fibrosis – how your experience can shape tomorrow – We were joined by Trust staff, CF researchers, adults with CF, parents, and our CF Ambassadors who shared their knowledge of how Involvement is driving forward CF care, research, new treatments, recognition and support. Watch the recording

Find out how you could join in with future involvement activities

20 January 2021 – Physiotherapy and exercise: support, advice and tips on how to stay physically active – Our expert panel discussed how physiotherapy care and our exercise habits have changed due to COVID, and shared tips to help you stay physically active, and sharing tips and on getting motivated through the winter months. Watch the recording.

4 November 2020 – Clinical trials: how you can shape the future of CF medicine – Dr Retsch-Bogart from the CF Foundation (USA) was joined by CF doctors and people with CF who have participated in clinical trials to talk about the type of emerging therapies we can expect to see progressing through CF clinical trials in the near future. Watch the recording.

HIT-CF was also mentioned during this event. You can find out more about this here.

7 October 2020 – How we're working to beat antimicrobial resistance (AMR) in cystic fibrosis – Our panel of CF researchers discussed what's involved in tackling drug-resistant CF infections and why they're needed. Watch the recording.

23 September 2020 – Work and money: know your rights – Our panel discussed the support available to help adults with CF understand their employment rights, maximise their income and navigate the benefits system. Watch the recording.

19 August 2020 – Returning and settling back into education – Our expert panel answered some of your questions about going back to school and discussed the support available. Watch the recording.

5 August 2020 – How your data makes a difference – Our Registry team spoke about the importance of your data and how it helps us improve the lives of people with cystic fibrosis. Watch the recording.

8 July 2020 – Kaftrio Community Event – David Ramsden, our Chief Executive, and Dr Keith Brownlee, Director of Policy, Programmes and Support, chaired a live virtual community event about the latest updates on Kaftrio. Watch the recording.

Research we fund

We fund research to tackle some of the most pressing issues in CF today. Find out how your donations are making a difference.

What is CF?

Cystic fibrosis, or CF, affects the lungs, digestive system and other organs, and there are over 10,600 people living with it in the UK.

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Get in touch with us to speak to someone on our Helpline, find out about an event or speak to our Press Team.

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