The conference starts for real today
(Thursday) with sessions on a range of topics including latest developments in
CFTR research, innovative approaches to improving adherence and ways of
supporting the growing number of adults with the
condition.
Later today there is also a plenary
session entitled ‘Roadmap to a Cure’, which I am particularly looking forward to
attending. People in the UK can tune into this session via live streaming at
http://www.prolibraries.com/cff/events/2013annual although it is not due to start
until 11.20pm UK time, I'm afraid.
Through the day we are planning to
catch up with colleagues from Canada , France and Germany to
discuss ways of collaborating on common challenges, and we are due to meet the
Vertex team too. This conference will be the venue for further information on
the latest clinical trials of Vertex’s combination therapies which are
generating a lot of interest within our community, and we will make sure we
communicate any information we receive on these.
Yesterday, Janet Allen and I had a
series of meetings with partners, including two pharmaceutical companies,
Gilead and Forrest. We are very keen to develop
closer relationships with industry to help drive our research and clinical
ambitions.
We also spent a couple of hours
talking to Dr Diana Bilton, the lead adult cystic fibrosis consultant at the
Royal Brompton Hospital in London . Di is a fantastic champion for the
cystic fibrosis cause and chairs the NHS’s Clinical Reference Group that helps
shape NHS policy in England on key issues relating to
cystic fibrosis care.
We discussed NHS funding of cystic
fibrosis centres, the program we have launched to provide genotype testing for
people with cystic fibrosis, and innovative ways to develop new models of
care.
The Trust works closely with Di on a
range of issues and it is one of the bizarre features of conferences like this
that they provide rare opportunities – 6,000 miles from home - to have in-depth
discussions with people who may work only a few miles away from us in the
UK.
Just after lunch, I took the
opportunity to take a quick look at the Salt Lake
Temple , the spiritual home
of the Mormons. Salt Lake
City was founded by the Mormons more than 150 years ago
and their headquarters is only a few hundred yards from the Convention Centre
where this conference is being held.
One of the legacies of the Mormon
pioneers is the extremely wide streets here. So to ensure that pedestrians are
properly protected as they make the long trek to cross the road, red flags are
provided at some crossings to warn oncoming traffic. It’s a bit over the top in
a city where traffic is relatively light but I was happy to try it out and you
will pleased to know that I arrived safely at the other side of the
street!
I’m looking forward to our meetings
today and we’ll keep you posted on what we learn from the sessions we
attend.
Informative blog, thank-you! I look forward to reading more of your perspectives on the conference and information emerging from it!
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