13.06.2016 The #StandUpforPeyronies campaign to raise awareness of Peyronie’s Disease launches today. Our press release is here Peyronie’s Press Release and you can look at our Peyronies infographic here.
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In May 2016 NICE decided to review their guidance on radiotherapy, and a questionnaire was made and send out to patients who had recieved the treatment. The decision is due to be reached December 2016, wether to change the guidance or not.
On 28th December we held our Trustees meeting, it went very well with a good attendance and a lot of things being discussed. The 2015 finances BDS was accepted, and the BDS 2015 trustee meeting minutes emailed around for approval.
On 30th November NICE held their appeal meeting, the BDS had a pro-bono sollicitor present and Anna Schurer, the BSSH was represented and the manufacturer was represented by several members of Sobi, their sollicitor and a surgeon. Now we have to wait 4-6 weeks for their decision.
The lectures from the May 2015 Dupuytren’s conference in Groningen are starting to appear online. Check out what was said and by which specialist, the latest ideas and research is being discussed.
NICE has decided against funding Collagenase injections (Xiapex) on the NHS in England. Instead they have asked for more research. This is devastating news for a lot of patients and will create a divide between England where surgery will be the only option without going private, and Scotland and Wales where Xiapex can be funded. We have therefore lodged an appeal, which has been granted. The fight continues. The appeal meeting will be 30th November. Fingers crossed if you can!
A new page on the website, with tips how to cope with Dupuytren’s and Ledderhose
A trial starting in Oxford led by Prof Nanchahal and his team, trying a novel treatment to stop nodules developing any further
The NHS is going to fund a trial looking into the longterm benefits of collagenase injections, compared to needle aponeurotomy