Friday 14 June 2013

ECFS Conference, Day 3 Influence in Europe

Ed Owen, CEO at Cystic Fibrosis Trust reports on day 3 of the EU Cystic Fibrosis confernece.

Improving and transforming the lives of people with cystic fibrosis is our mission and the Cystic Fibrosis Trust has been hard at work in Lisbon at the European Cystic Fibrosis Society (ECFS) conference on ways to help achieve it.
Elaine Gunn, our Registry manager, has been working closely with international colleagues here on developing an effective data registry for Europe to help drive research and clinical treatments.
And Janet Allen and I have been meeting researchers, international partners like the Cystic Fibrosis Foundation (CFF) and industry representatives to develop support for new initiatives to drive innovative science and improve treatment regimes for people with cystic fibrosis.

Janet, who as our Director of Research has built a strong global reputation after just nine months in the job, took delegates through our new research strategy at a specially convened event at the conference. She explained to an assembled group of clinicians, scientists and pharmaceutical companies our desire to collaborate on joint projects to boost the overall research effort in cystic fibrosis.

The strategy has been very well received and Janet, together with Professor Stuart Elborn, ECFS President and one of our trustees, explained how our new funding arrangements would work and how we wanted to ensure Trust funds were used to ’leverage‘ resources from others.

Later at the same meeting, I was joined by Dr Diana Bilton, the lead consultant at the adult centre at the Royal Brompton Hospital, to talk to UK consultants about issues relating to clinical care, including the Quality Improvement Programme to raise standards of cystic fibrosis care within the NHS.

Tomorrow, Nick Medhurst, who heads our public affairs activities, will be helping to enhance our relationships with fellow European cystic fibrosis patient organisations so we can learn from each others' experiences and enhance our ability to secure EU funding for research.

One of the important strengths of the Trust is our ability to work with many different partners to improve the lives of people with cystic fibrosis. Collaboration in so many forms is helping to deliver our mission.


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