Sunday, 24 July 2016

July 2016

We had a trustee meeting last week, everyone agreed the Peyronie's campaign had been a success and the message went further than we had expected. Now to decide whether to do the same thing for Dupuytren's and Ledderhose. Dupuytren's has had quite a bit of attention in the media with first Pfizer, then Sobi doing awareness campaigns. Ledderhose is the forgotten condition that gets hidden away in shoes and nobody notices it.
The BSSH together with the JLA (James Lind Alliance) have a survey they would like patients in Britain with hand or wrist conditions to take (or those that care for a patient with hand or wrist problems) Check this page for more information and links to the survey.  
We have started writing to researchers hoping to put together a webpage on research being done at the moment. Ideally every team would write a few lines for us explaining their research and what they are hoping to achieve. After 2 days I had 3 replies already, so far so good. Only 15 more replies to come I hope!
We are still waiting for NICE to make their final decision on Xiapex after it went back to the appraisal committee, and for a different group from NICE to make a decision about radiotherapy. Let's hope both decisions are patient friendly and allow access to the treatments the patients want!

Keep well and look after yourself folks!

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