Webshop

We have set up a webshop! It has taken quite a while to get to this stage, but it is finally up and running. The address is: https://dupuytren-shop.teemill.com/ You can read what we offer here: https://dupuytrens-society.org.uk/webshop/ Any profits will go to Dr Eaton's Dupuytren Research Group, to help in the search for a biomarker. Delivery is to most countires worldwide, and more products or logos can be added anytime. I hope you like it!

July 2016

We had a trustee meeting last week, everyone agreed the Peyronie's campaign had been a success and the message went further than we had expected. Now to decide whether to do the same thing for Dupuytren's and Ledderhose. Dupuytren's has had quite a bit of attention in the media with first Pfizer, then Sobi doing awareness campaigns. Ledderhose is the forgotten condition that gets hidden away in shoes and nobody notices it.

 

The BSSH together with the JLA (James Lind Alliance) have a survey they would like patients in Britain with hand or wrist conditions to take (or those that care for a patient with hand or wrist problems) Check this page for more information and links to the survey. http://www.bssh.ac.uk/patients/bssh_james_lind_alliance_partnership.aspx  

 

We have started writing to researchers hoping to put together a webpage on research being done at the moment. Ideally every team would write a few lines for us explaining their research and what they are hoping to achieve. After 2 days I had 3 replies already, so far so good. Only 15 more replies to come I hope!

 

We are still waiting for NICE to make their final decision on Xiapex after it went back to the appraisal committee, and for a different group from NICE to make a decision about radiotherapy. Let's hope both decisions are patient friendly and allow access to the treatments the patients want!

Keep well and look after yourself folks!

Radiotherapy for Dupuytren's experience wanted, and video interviews for general awareness

Even though NICE has not decided on Xiapex use yet, they have now decided to review the guidance for radiotherapy in early Dupuytren's. So far it was limited guidance with any NHS treatment needing to be done in a centre where the results were special arrangements for clinical government, consent, and audit or research are in place. This has limited the number of centra willing to perform the treatment.

NICE now decided on a consultation where they want patient to fill in a questionaire, to help them decide if the procedure is safe and effective enough and if special consent is needed.

So we are looking for any patients who have had radiotherapy treatment and are willing to help, to start by filling in a questionaire, maybe at some stage one or two will be asked to come to London or Manchester for the appraisal if NICE wants to ask more questions (that is what happened with the Xiapex appraisal, but you can just say no if you can't come).

So please, anyone who had radiotherapy and wants to help try and make it available for more patients, contact me on anna@dupuytrens-society.org.uk , or via our Facebook page or group.

We are also still looking for people to do a video interview with SayCommunications on how Dupuytren's has affected their life, everyday tasks, work and / or hobbies, for an awareness campaign.

This will be to explain to doctors and the rest of the community that even if Dupuytren's is not dangerous it does need  treatment before a patients hands get really bad.

And of course we are still working on a campaign for Peyronie's, Dupuytren's little brother disease that nobody likes to talk about. But we will change that!

So if you want to help us with any of these causes, use my email, go via the website on the contact us page, go to our Facebook page.. get in touch!!