CF LIVE

Hear from members of our Involvement Group, Clinicians, Researchers and Trust staff as they discussed the power and value of the lived experience, and how it can inform the work of the Trust and future research.

Watch the recording

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.

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.

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.

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.

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.

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. 

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.

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.

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.

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.

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. 

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.

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.

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.

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. 

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.

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.

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.

Our expert panel answered some of your questions about going back to school and discussed the support available. Watch the recording.

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.

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.