CF LIVE

CF Live

CF LIVE

The online series uniting the CF community with researchers, clinicians and more

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 [email protected]

CF LIVE: How can you get involved and influence the work of the Trust and future research?

Join us for this CF LIVE and hear how our Involvement Group members have shared their experience of living with CF to inform the work of the Trust and future research. Members of the community, colleagues, clinical leads, and researchers discuss the power and value of lived experience.

Wednesday 28th February, 7pm

Register here

Watch recordings of previous events

  • 24 January 2024 – Paediatric CF Care: Insights from the UK CF Registry and our patient experience survey

    Our panellists spoke about how things are changing for children with CF, as well as discussing the latest patient experience survey in children’s CF services, and how it can help us understand what's going on in CF care and where services can improve. Watch the recording.

  • 17 October 2023 – UK Cystic Fibrosis Conference Recap

    Earlier in the month, CF researchers gathered at the UK Cystic Fibrosis Conference (UKCFC), the Trust’s flagship annual conference for scientists and clinicians working in CF research. This CF Live event saw presentations from four CF researchers in the early stages of their careers, who presented at the conference, as well as hearing about the hot topics and headlines from UKCFC. Watch the recording.

  • 26 June 2023 - Gut Health

    Our expert panel looked at the connection between our minds, the gut and diet. They covered the gut-lung-axis, gut microbiota, GI symptoms, underlying challenges in the CF gut, diet, stress, anxiety and much more. Watch the recording.

  • 13 June 2023 - Genetic therapies

    Genetic therapies are a different type of treatment that are being developed for cystic fibrosis. They work in a completely different way to current medicines for CF, and we hope that people with CF will have the opportunity to take part in genetic therapy clinical trials in the next few years. Watch the recording.

  • 25 April 2023 - Mindful eating

    We hear from a panel of experts to explore what mindful eating is and how it can be helpful for people living with CF. We discuss the psychology behind mindful eating and how to develop mindful eating practices, provide dietary advice, and share information on a current research project that evaluates Cystic Fibrosis Mindful Eating Practices (CFMEPs).  Watch the recording.

  • 31 January 2023 - CF and diabetes

    We take a look at cystic fibrosis diabetes (CFD), one of the most common complications in CF affecting up to 50% of adults with the condition. We look at how it is treated and managed particularly in relation to diet, hear from people with CF about their own experiences of living with CFD, and get tips on self-management. Watch the recording

  • 11 October 2022 - Nutrition and modulators

    We hear from a panel of experts about the indirect effects of taking modulator therapies such as Kaftrio, and the experiences of the CF community, on appetite and food intake. We discuss the impact on weight, body image and GI symptoms, as well as pancreatic function and vitamins. Watch the recording.

  • 9 August 2022 - Cystic fibrosis and nutrition

    At this CF LIVE event, specialist CF dietitians and psychologists provided a brief overview of how we have seen CF nutrition evolve and change since the introduction of modulators, and discussed the ongoing need for individual care for all – those with access to modulators, those without access to modulators, and those where modulators are not working as well as in others. We also outlined our plans for the next CF LIVE nutrition-focused events. Watch the recording.

  • 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 to 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 groundbreaking clinical trial set to change lives

    Cystic Fibrosis 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 and 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

    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. There are around 11,000 people living with it in the UK.

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