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December: The government has put Dupuytren’s on the list of industrial diseases, and a claim form can be found here, along with a guidance note. You can only claim in certain circumstances which are explained on the guidance form.
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The news is official. Endo has already discontinued Xiapex in Australia and Asia, and plans to do the same to Europe by the end of 2019. The reason? They won’t say. We suspect the higher prices in the US and the pending license for cellulite play a role. Even if they proclaim to be an ethical company, they want more return for their shareholders and bonusses for their CEO’s. At the cost of depriving patients, and denying them a treatment that may help keep their hands mobile, straighten their penis, keep their life normal.
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Our third webinar was titled “A cure for Dupuytren’s, how and when?” and we had as speakers Prof MacGrouther, Prof Furniss, Prof Nanchahal and Drs Laird and Beamish. It was a very informative webinar that gave an insight into research past and present, the difficulties with research, and how the search for a cure is moving forward. All webinars can be seen on our YouTube channel.
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We have held a second webinar. This one was be on PNF, speakers are Prof Tim Davis, Prof Steven Hovius (who did the lipofilling trial), Dr Gary Pess (who performs more PNF than anyone else in the US probably), Prof Chris Bainbridge (from the Pulvertaft Centre in Derby), and patients Ian Ireland (personal experience) and Anna Schurer (PNF and the NHS).
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Oxfords own professor Jagdeep Nanchahal has won the 2019 Dupuytren’s Award, for his work on adalimumab in Dupuytren’s (the RIDD trial) This award was sponsored by patients from the BDS and the (now defunct) American DDSG Facebook group, as well as the IDS (International Dupuytren Society). A worldwide acknowledgement for the study. Many congratulations to Prof Nanchahal and his team.
https://www.dupuytren-online.info/dupuytren_award.html -
February: The Liverpool group who are doing research would like more participants for their meetings! If you are interested, look at the poster and contact them or me!
The first meeting was informative and pleasant, great to see researchers working on our problem, and lovely to meet other patients.