The British Dupuytren’s Society is a UK based charity founded in August 2011 as a patient organisation, supported by medical professionals, and is a daughter organisation of the International Dupuytren Society (IDS).
The Board of Trustees consists entirely of volunteers, the chair and the treasurer are Dupuytren’s patients and the other two patient trustees are a Ledderhose and a Peyronie’s patient. Our Doctors trustees are three hand surgeons one of whom is also involved in research, one Urology consultant, two radiation oncologists and a podiatrist.
The Society also has a panel of volunteer Doctors acting in an advisory capacity, and recently we were joined by a massage therapist as advisor, who is very experienced treating Dupuytren’s patients.
By 2016 we set up a membership option so people can be kept up to date via a newsletter with the latest news or patient stories. By giving your details on this page you agree to receiving a newsletter 3-4 times per year and the occasional email in between when we have important things to share about the charity or concerning treatments or research. If we ask for your postcode or living area that is so we can target emails better for local projects.
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, and as from 18-12-2017 we are an officially registered charity, with a charity number granted by the Charity Commission. We are number 1176333. Our present constitution is based on the Charity Commission’s example.
We put a lot of effort into creating our presence on the Internet by building our website, opening and maintaining accounts on Facebook and Twitter, and writing a blog. This remains an ongoing effort, as we respond to Facebook posts, tweets, and revise the website according to the latest news and developments.
In 2018 we produced a webinar in cooperation with Prof Tim Davis and a group of carefully selected providers of Dupuytren treatment. The topic was surgery (fasciectomy) with a mention of radiation. To date (2020) three more webinars have followed.
We have been liaising with Pfizer and later Sobi, the companies that marketed Xiapex, attended a road show and went to a workshop Pfizer organised to explain the NHS structure to medical charities (we are not affiliated to Pfizer or Sobi and evaluate all medical information and treatments independently). We were involved in the NICE appraisal of Xiapex, with Sobi, the BSSH and the BAHT. Sadly the relationshipwith Sobi has come to an end as Xiapex has been taken of the European market.
We also emailed several GP training websites, asking them to update their information on Dupuytren’s and related diseases, as most still state that surgery when 30% contracture has been reached is the only treatment. We think doctors and patients should become more aware of the possibility of radiotherapy and PNF (both have guidance by NICE) . Some of those sites have now changed and are a lot more informative.