Highlights from the world’s biggest CF conference

What have you been thinking about most since leaving the conference?

“CF teams need to change how they work to support people with CF as their care needs change. However, they also face challenges in recruitment and retention to some posts”, commented Jacqueline Ali, Head of Information and Support at the Trust. “I’ve been asking myself is there more we could do to attract and inspire the next generation of CF professionals.”

“I’ve been inspired by the progress that has been made in CF, but increasingly aware of the gaps where we still don't have the answers” commented Dr Gwyneth Davies, CF researcher and paediatrician at UCL Great Ormond Street Institute of Child Health. “Research has to be inclusive, flexible, and responsive to the needs of (all) the CF population.”

“One thing that stuck in my mind is the enormous scale of the effort that is going in to tackling the challenges of CF. So many people are focused on such a wide variety of topics, which they are addressing with commitment and urgency. While marking progress, we should never forget that CF is life-long, life-limiting condition without a cure” said David Ramsden, CEO of Cystic Fibrosis Trust.

Which presentation were you most excited about?

It was a tough question to answer – it was impossible to go to all of the conference presentations, as there were around 400 talks and over 800 hard copy presentations known as ‘posters’ at the conference! Here are some of the talks that people highlighted to us.

• Talks on genetic therapies Genetic therapies are a type of treatment that work in a different way to other medicines that people with CF are taking. There was a great deal of discussion about them at the conference. “Amid the excitement that they are starting to be tested in early clinical trials, it was sobering to hear about some of the questions that still need be answered before they can become effective as treatments,” commented Dr Paula Sommer, Head of Research Awards and Partnerships at the Trust.
• Updates on CF diabetes There was a focus on CF diabetes at this year’s conference, a topic you told us is a priority area of research. Dr Andrea Párniczky, a Hungary based researcher who is a co-investigator on our CF diabetes SRC commented: “The discussions at the conference reinforced the results of my own research.” It was great to see some of the results from this SRC included in the main ‘plenary’ on CF diabetes.
• Collaborations to diagnose lung infections Dr Rebecca Holmes from the medical charity LifeArc works on CF lung infections. At the conference she shared some new guidelines that the CF AMR Syndicate have recently developed, to support companies to improve how CF infections are detected and diagnosed. The guidelines known as Target Product Profiles or TPPs are based on the priorities of people with CF. “I was particularly interested in the various presentations on interactions in the lung microbiome (the microbiome is all of the bugs that grow in our lungs) and treatment strategies for combatting persistent infections,” Rebecca said. 
• Cost of living with CF around the world Our Director of External Affairs Clare Corbett attended a session on cost issues facing people with CF, which reflected many of the themes of our Your life in CF survey. “There was also an extremely powerful presentation by a CF parent and campaigner from India, who talked about the realities and painful bereavements faced by families who know that modulator treatments exist but cannot access them for their children,” she commented.

Meeting people at the conference was also a highlight for David Ramsden. He said: “The opportunity to meet with people from many different countries is a real highlight for me. Hearing and learning from their insights and experience helps to identify ways in which we can work together and informs our actions in the UK.”

Watch for yourself!

Every year three talks of the conference known as ‘plenary talks’ are broadcast live on YouTube, and they are still available to watch again now. Each talk is around an hour long.

Plenary 1 on genetic therapies in this talk Drs Daniel Siegwart and Joe Pilewsk highlighted what genetic therapies are, how they work and what progress has been made so far in developing each type of treatment.