Thursday 12 June 2014

A First Time View of ECFS Conference

Today's blog from ECFS Conference comes from James Barrow, our Head of Public Affairs, who is first time attendee to the event

It is my first time at the European Cystic Fibrosis Society (ECFS) annual conference. The atmosphere is friendly and optimistic with a strong sense of community.

Yesterday I attended the Opening Ceremony led by Johan Mostrom, Chairman of the Cystic Fibrosis Association of Sweden. As part of it Ulrica Sterky - a parent and Chairperson of the Local Liaison Committee, gave a personal account of her family’s journey with cystic fibrosis since the birth of her son in 1982. She highlighted the positive changes during his lifetime and reminded delegates of the importance of putting people with cystic fibrosis at the heart of research.

I then met Orla Tinsley, a journalist and author who has successfully campaigned for the rights of cystic fibrosis patients in the Republic of Ireland. It was fascinating to hear how the power of personal stories made cystic fibrosis a national issue in Ireland and improved standards of care. Very inspiring.

This morning I met with Vertex Pharmaceuticals to discuss the drug pipeline followed by sessions on ‘New Psychological Approaches and Transplantation - Challenges and Hopes’. 

Psychologists from across the globe discussed the need for a holistic approach to psychotherapy and evidence to support the effectiveness of e-help and group methods. 

During the transplantation session EU statistics showed that the UK has the highest survival rates post-lung transplantation but the second longest waiting time pre-transplantation. I was interested to learn that Germany recently introduced a lung allocation system, similar to the one we are campaigning for, which reduced waiting list mortality from 22% to 14%.

Next is our meeting - the UK Cystic Fibrosis Trust. A great opportunity to talk about the work we are doing. Then onto a workshop about ‘Screening and Diagnosis’.

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