We were asked to do a 45 minute talk this month about Dupuytren's and what it means for patients, in Copenhagen. With less than a month notice neither Gary nor I could get the time off work, so I asked Wolfgang Wach of the International Dupuytren's Society, and he has agreed to do it as he had the day free. Thank you Wolfgang!
Nice has decided to progress with the Technology Appraisal of Collagenase injections, so we have been emailed a lot of paperwork for this 2 days ago, we need to go through it all, respond before 25th October to be part of the process. We do want to be involved and give a patients point of view about getting collagenase accepted for use on the NHS. However we need to put forward 'Patient experts' and 'Clinical specialists' willing to show up at the meeting ( London or Manchester, not sure yet which) in July 15th 2014 and explain to the Nice people what it means to have Dupuytren's, what it involves to have surgery and recover from that, what Xiapex means to a patient. So we need volunteers who have experience with living with Dupuytren's and treatment with Xiapex and/or surgery. This needs to be decided quickly as we need to fill in the forms and consultees have to sign them, to arrive at Nice by 25th October.
Anyone ( patient doctor carer) interested please contact me on firstname.lastname@example.org
At the previous meeting Nice paid travel expenses, the meeting lasted about 3 hours and started 13.30 pm to allow people time to arrive from where they were coming.
After talking this through with Gary we may put another request on Facebook and maybe email a few people directly. For now please get in touch if you feel you could help (also if you are interested in becoming trustee or just helping out with reading papers or organising files).