The British Dupuytren’s Society….
provides support and information to people affected by Dupuytren’s disease, Ledderhose disease, Peyronie’s disease and related conditions. Our goal is to raise awareness, improve knowledge of the treatments available and encourage research into their prevention and treatment.
22nd June 2017 NICE has published their decision on collagenase use in the NHS, and we are happy with it! No more appeals.
It is allowed with some provisions: only if PNF is not suitable, if it does not interfere with a trial ongoing by Mr J Dias, and if surgeon and patient agree on the use.
Of course where you live can still be a problem, different CCG’s have different rules on how or when to treat Dupuytren’s, but at least it is not a rejection, and surgeons now using it can continue using it.
We owe a great debt to all those who fought for our community, the hand surgeons and therapists involved, everyone at Sobi and the solicitors who helped us (pro bono) with the appeal.
May 2017 A new page on the website- a daughter page of the research section, on planned and ongoing trials.
From March 28th till April 11th 2017 a short survey can be taken, we have worked with Sobi on it to find out what postcode areas have the higher incidence of Dupuytren’s (Viking areas?) and what treatments are available in what area. UK and ROI residents only please. https://www.surveymonkey.co.uk/r/8CJPQH8
Unfortunately the funding for a secretariat two days per month has stopped per January 2017, so Gemma has withdrawn from the position. That means we are now looking for one or more people to take over looking for grants, organising events and generally assisting the running of the charity. Location is not important, enthusiasm is! Please get in touch if you can help, however many or few hours per month.
While Gary and his wife are running to raise money for the charity, Anna spend two days in February 2017 promoting the charity at a BSSH instructional event, where young aspiring hand surgeons attended lectures by some of the worlds most experienced hand surgeons.
All the volunteers at the British Dupuytren’s Society wish you a very merry Christmas, a good time with friends and family and all the best! (picture courtesy of Katie Manley, Gary’s wife).
NICE has put the latest Radiotherapy guidelines on their website. It will remain available on the NHS for Dupuytren’s but limited to clinics that can and will perform audits of the results. There are no safety concerns for the treatment, and repeat treatment is a possibility. So for now not much changes, and clinics that perform RT on the NHS should be able to continue doing so as long as the patient’s CCG pays.
We are supporting Rare Disease Day on 28 February 2017 – find out more here
Read our winter newsletter and sign up to receive all our news 19.12.16
Our Research page with information about the latest research keeps growing.
Read our latest newsletter, you can also sign up at the link to receive the next one straight to your inbox! 24.10.16
A worldwide fundraiser campaign has started to raise funds for the Dupuytren Foundation who are planning a large scale study to find biomarkers that may predict active disease in patients blood. The hope is that this can lead to a cure for the next generations.
We have welcomed three new trustees to our charity in the last week! Mr Mike Hayton BSc (Hons), MBChB, FRCS (Trauma and Orth), FFSEM (UK); Mr Richard Shaffer MBBS, BSc (Hons), MRCP, FRCR; and last but by no means least Mr Dominic Furniss DM MA, MBBCh, FRCS (Plast). Two hand surgeons, one of whom is also involved in genetic research, and a radiation oncologist!
We have two new trustees, Mr David Ralph BSc MS FRCS (Urol) for the Peyronie’s side, and Dr George Flanagan, podiatrist surgeon for the Ledderhose side.
Read our summer newsletter, and subscribe to our mailing list 28.06.16
The British hand surgeons (BSSH) together with the James Lind Alliance (JLA) have a short survey for any patients with hand or wrist conditions in Britain, or their carers. Go to this page to read more and click on the survey link.
Membership can be applied for here
The British Dupuytren’s Society is a UK charity founded in 2011 as a patients’ organisation, supported by medical professionals, and working alongside the International Dupuytren Society (IDS).
The Board of Trustees consists entirely of volunteers: a Dupuytren’s patient as chair and one as treasurer, and a Ledderhose and a Peyronie’s patient as trustees leading those departments. We also have three trustee hand surgeons (one of whom also does research), a consultant urologist, a podiatrist and two radiation oncologists. We have an advisory board with a few more handsurgeons, and a massage therapist who is very experienced treating Dupuytren’s patients. Finally we have one lay member of staff who does not have any of the conditions, she works as our secretariat 2 days per months and is sponsored by the industry.
The British Dupuytren’s Society was founded in August 2011. Our first step was to create our Constitution and Board of Trustees. We are now registered with HMRC for tax-exempt status as a charity, but since our financial turnover does not meet the minimum requirement we cannot yet apply to become a registered charity. Read more…………
The Curse of the MacCrimmon
A history of Dupuytren’s Contracture. There are many stories as to how the curse arose. Some say that the….
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