• Our winter newsletter came out just before Christmas 2016
  • 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 had a trustee meeting in London IN December 2016, in Mr Ralph’s office. A shame he was held up in theatre himself, but we had a fruitful meeting and the chance for the doctor trustees to talk to each other. We have some clever people involved with the charity now, who are passionate about helping patients!
  • 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.

  • Together with BMI hospitals we have produced a page on Dupuytren’s and one on Peyronie’s.

  • NICE appeal decision 29.06.16
    We are pleased that NICE (National Institute for Health and Care Excellence) has accepted part of our recent appeal against their decision regarding Collagenase injections for Dupuytren’s disease patients in England. Patients suitable for Percutaneous Needle Fasciotomy (PNF) will still have to go down this route but the good news for other patients is the treatment now goes back to appraisal stage. Anna Schurer, chair of the British Dupuytren’s Society said: “We are pleased that NICE have listened to our appeal and will reconsider. Whilst they have upheld their original decision regarding patients eligible for PNF, we remain optimistic that Collagenase injections will be made available for other patients as an alternative to surgery on the NHS. We will continue to lobby for this treatment on behalf of those with Dupuytren’s disease.” Collagenase injections are already approved for use in Wales and Scotland.

  • Our #StandUpforPeyronies campaign launched today 13.06.16

  • The survey started in 2014 will run for a bit longer, if you have not participated yet feel free to do so!

  • A new page added as addition to our history page. This one on hand miracle healings.

  • In April 2016 we were joined by Stephen Jeffrey LCSP from Ealing massage Therapy as advisor on massage therapy for Dupuytren’s.

  • Rare Disease Day 29.02.16
    Ledderhose disease is a rare disease affecting 1 in 2,000 people in the UK. It causes lumps on the sole of the foot causing pain and making it difficult to walk. Most patients are in their 50s when it starts but some are much younger and it can crush hopes of an active athletic life. There is no recognised guidance for treatment but orthotic insoles can help, and sometimes patients are referred for radiotherapy or surgery. Often patients have to use crutches or a wheelchair to get around.  We hope Rare Diseases Day helps to raise awareness of conditions like Ledderhose and would urge people with the condition to connect with on Facebook and share their experiences with us.
  • Say Communications organise fundraising event for the BDS 22.01.16