CF Community Review
Members of the Consortium have contributed to an ongoing dialogue with the CF community regarding progress in the field of gene therapy. Examples of some of these community education events are summarised below:
Cystic Fibrosis Trust Special Meeting, 23rd January 2010
A large public meeting was held in the Imperial College London Great Hall on Exhibition Road, London. The meeting was heavily oversubscribed.
Cystic Fibrosis Trust Regional Meetings, 2009
During 2009, members of the Consortium Strategy Group gave presentations at CF Trust Regional meetings held throughout the UK.
19/09 Bury St Edmonds
Example Of CF Community Feedback received:
"Thank you very much for the very interesting presentation and the file. Our family is "new" to the CF world and we found your presentation very interesting and useful to understand where we are"
"We left the event with great hopes that one of these days, soon, you will be able to help our 3 month old grandson. I am convinced that is only a matter of time (and money) before you develop the cure and that thought helps tremendously our acceptance of the struggle ahead of us"
"At the meeting, I was asking Rosie when decisions will be made about the Wave 2 work and I hope that you get enough funds to get you going on this. Although we hope the results of Wave 1 will be sufficient for our grandson"
"Fingers crossed, and remember : no holidays, nor sleep, for your team(s) until you have won the battle. In the meantime we will try to raise funds to help out, be reassured of that"
Cystic Fibrosis Trust Regional Meetings 2005
Members of the Consortium Strategy Group gave presentations at CF Trust Regional meetings held throughout the UK during 2005.
Information for Patients on Our Clinical Trial
Consortium Members' Internal Website
Medical Futures Innovation Award 2011