Setting the scene for ECFS

As the first day of ECFS Conference draws to a close, Ed Owen, Cystic Fibrosis Trust Chief Executive, sets the scene for what the next four days will mean for the cystic fibrosis community across Europe and beyond.

I arrived in Gothenburg, Sweden’s second city, yesterday evening to take part in the annual European Cystic Fibrosis Society conference.

It is an extraordinary event that runs for four days with clinicians, scientists and bio-pharma companies from across Europe and elsewhere congregating to discuss crucial issues relating to cystic fibrosis research and care.

And it is a vital opportunity for me and colleagues to build relationships with key people and organisations to assist the Trust’s work to improve and transform the lives of people with cystic fibrosis in the UK.

So last night I caught up with my equivalent in the German cystic fibrosis charity, Andreas Reimann, to discuss how we can work together in Europe to boost the number of clinical trials to accelerate the development of new therapies and treatments. Today I am meeting other associations, and key clinicians who operate as part of the European Clinical Trials Network.

Alongside this and the many seminars and workshops that are held at the conference I also have meetings booked over the next few days with a series of pharmaceutical companies to discuss cooperation in key areas of research – and we also have a meeting with the many UK-based clinicians here this week to discuss how we make sure the relationship between the Trust and health professionals is working effectively for the good of all people with cystic fibrosis.

Some weeks ago there was talk that this conference might be the occasion when Vertex revealed the data from its Phase 3 trial of its combination therapy of VX-809 (lumacaftor) and Kalydeco (ivacaftor) for those with two copies of the D508F gene. Unfortunately we are going to have to wait a few more weeks for that, as the company’s CEO, Joe Leiden, told me when he was in London last week.

But, as with all cystic fibrosis conferences being held at this time, there is a collective sense of cautious optimism among all those here with new therapies and treatments offering the potential to have a fundamental impact on those with the condition, and better understanding to further improve the way the symptoms of cystic fibrosis are treated.

We are determined to ensure the Trust plays its part in making this happen. This week will contribute to helping us do so.