-Our first webinar has taken place and has gone well, a collaboration with several hand surgeons, led by Prof Tim Davis. We are already thinking of doing more of them! If you want to watch the webinar it can be accessed online. We also managed to have our AGM, it is not an easy feat to get enough trustees online at the same time, as inevitably there will be someone held up in clinic or theatre, another out of the country for conferences and lectures. But we managed. For next year we will continue to support patients as best we can. We are hoping to do another webinar (or two??) and maybe some question and answer sessions on our closed Facebook group.

-The next Dupuytren Conference, planned for 2020, has been confirmed and will take place in Oxford. This will be a meeting of the top doctors and researchers, and we are very excited about it.

-Verapamil gel can now (August 2018) be obtained in the UK. Verapamil gel, used as topical treatment for superficial fibroses in the USA, can now be obtained in the UK. The process for getting hold of Verapamil Gel in the UK: It can be prescribed for Dupuytren’s, Ledderhose and Peyronie’s. The main use in the US is for Ledderhose, some patients get pain relief and shrinking of the nodules but it does not work for all. Surgery or radiation therapy may still be needed. You need a prescription from a GP, Podiatrist or other Medical Specialist in one of the conditions (hand surgeon, orthopedic or plastic surgeon, urologist or Urology Surgeon, Foot and Ankle surgeon..) The prescribing doctor can get all information needed from WEPClinical. The doctor also needs to fill in a form explaining your medical condition that the Verapamil is being prescribed for (a template of the form can be obtained from WEPClinical who are instrumental in making this possible. ykhera@wepclinical.com or 0208 0048186 , attention of Yasmin Khera, outreach manager) The paperwork then gets send off to America where a doctor checks it all and writes a US prescription for PD Labs to be allowed to prescribe and mail the product. Three months supply will be the maximum order for each shipment. The cost will be: -£155 per tube, three tubes comes to £465. – Shipping cost £40. -VAT around £35 Total expected cost £540 for three months treatment. As far as we know if this doesn’t work (some patients need 6 months treatment to notice the effect, some use it in total for up to a year) radiation and surgery are still possible.

-July: after contacting several NHS radiotherapy centres and asking them to consider treating Dupuytren’s and Ledderhose, we got a positive reply! In the Beatson Centre in Glasgow patients from West Scotland can receive radiation treatment for Ledderhose. Patients from other parts of Scotland can ask their clinicians to apply but are not guaranteed to be accepted. Clinicians are to contact Mr Schipani for more information. The first patient is actually being treated this week, I hope the response to treatment is good and the clinicians are happy about this new treatment modality. On a sad note the NHS is considering restricting certain operations even more, and Dupuytren’s surgery is one of the procedures named as ‘ineffective’ and doing more harm than good. The Hand Surgeons (BSSH) have already made a statement and I have offered the Charities help if there is anything we can do in a consultation to show surgery is effective.

-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 did a Thunderclap campaign.

-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. The Dutch radiotherapy trial for Ledderhose is well under way, there are plans for a Dupuytren’s radiotherapy trial in Australia, in Finland is a trial comparing PNF, Xiapex and LF surgery, and the two trials running in our country, RIDD and DISC are recruiting patients all the time. So doctors out there are trying to get more understanding of what treatment to recommend at what stage!

-After getting a charity number of the Charity Commission in December 2017, we found out we would have to apply for a new bank account and change all our donation sites. 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. February- We have started a fundraiser!

-We decided in co-operation with an American Facebook group to do a fundraiser, hoping to finance the International Dupuytren Award. This is a reward given to (or split over) the most promising Dupuytren research yearly, basic scientific or clinical (or both). Sponsoring this award will show researchers and surgeons that patient groups are interested in new treatments, and want to be involved.

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