Wednesday 12 June 2013

The European Cystic Fibrosis Society Conference: Preview

Cystic Fibrosis Trust Chief Executive Ed Owen gets ready for the ECFS conference in Lisbon.

Later today the start of the European Cystic Fibrosis Society conference gets under way in Lisbon. It is warm and sunny here but there's no time for sunbathing you will be pleased to know. It's a packed programme with seminars on all aspects of cystic fibrosis care and research - from correcting CFTR to the role of parents in CF care.

All of Europe's top scientists and clinicians are here, along with other patient-based groups like us and big pharmaceutical companies investing in cystic fibrosis research.

It is a good opportunity to share experience to help improve outcomes for people with cystic fibrosis. I am also keen to explore where we can collaborate more with others in Europe and elsewhere to the benefit of people in the UK.

Many of the clinical trials bringing new drugs and treatments for people with cystic fibrosis are taking place in more than one country, and it makes sense for us to work with our colleagues in Germany, France, Netherlands and others - and to share costs - where this makes sense.

The Cystic Fibrosis Foundation (CFF) in the US always sends people to the ECFS conference too and Janet Allen, our research director, and I met up with two of its senior people over breakfast this morning to discuss areas of research we can work on together.

We heard their views on the latest developments in the Vertex pipeline of small molecule treatments in clinical trials. This pipeline only happened because of "seed funding" provided by the CFF a decade ago. It is a stark example of the benefit of patient-based organisations in drug development, and our new research strategy aims to draw on the best of their experience.

We are talking to delegates about our strategy tomorrow afternoon to help promote it among clinicians, researchers, other CF bodies and industry. Their collaboration with us is vital and we want them to work with us over the next few years. I will let you know how we get on later in the week.

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