Our New Years present to you for 2020:
We have started planning our Ledderhose Webinar! 100 attendees possible, you need to register via the link below. It will be Sunday 26th January 2020, at 4pm GMT. Speakers are listed below. Attendees from anywhere are welcome to attend, no restrictions.
Gary Manley – introduction, personal story, patients view, Ledderhose Blog
Markus Maiden-Tilsen – GP perspective, ultrasound diagnosis and steroid injection?
George Flanaghan – NHS and private options in the UK?
Richard Shaffer-Radiotherapy when and what age/patient? Side effects, results?
Eddie Davis– treatment options in the US including Verapamil and Hyaluronidase?
You are invited to a Zoom webinar.
When: Jan 26, 2020 04:00 PM London (= 16.00 hours GMT)
Topic: Ledderhose Disease
Register in advance for this webinar:
After registering, you will receive a confirmation email containing information about joining the webinar.
- 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.
- 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.
- 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).
- 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.
- We have participated in a webinar organised by Prof Tim Davis, aimed at Dupuytren patients and informing them of different treatment options and some of the research being done in Britain. The webinar is now online (November 2018) and can be viewed here.
- The BSSH have put last years hand surgeons University Challenge on YouTube.
- Verapamil gel can now (August 2018) be obtained in the UK. Our blogpost explains how.
- After registering with the Charity Commission and needing a new bank account, we have now (June 2018) been told we are a new organisation in the eyes of the HMRC and have to re-register with them. So organising other activities has yet again taken a back seat!
- We are working with Sobi and Say Communications to raise awareness for Dupuytren’s Disease, we ran a survey in May and are now working on a Thunderclap campaign. https://www.thunderclap.it/projects/70226-clap-hands-for-dupuytren-s We hope for a large worldwide reach of the message!
- On 03-05-2018 Michael Ng received the International Dupuytren Award for his work on ‘a genome wide association study of Dupuytren disease reveals 17 additional variants implicated in fibrosis’. He received the award at the Cardiff Spring BSSH days, out of the hands of Prof Tim Davis. This award was sponsored by the British Dupuytren Society in cooperation with the Dupuytren Disease Support Group.
- After getting a charity number, we found out we would have to apply for a new bank account. So that was the next problem to sort out! Took a few months and a lot of paperwork, but in March 2018 the new account was opened.