Wednesday, 17 June 2020

Peyronie's video

Prof David Ralph made a video for our charity to explain the different types of surgery available for Peyronie's Disease, and when each type is warranted. Watch the video here:

Monday, 15 June 2020

our resilience Training videos


We have more to show you!



These are video's to help you cope with a Dupuytren's diagnosis, finding your way through the (mis-)information out there, and moving forward.

Four modules for the Resilience Training:

-Why me https://youtu.be/QRGl0ZtF9J4

-What can I do https://youtu.be/nK5o4Ti6SOI

- How bad will it get https://youtu.be/68bMI1c-_Ks

-Who can I trust https://youtu.be/GQWv1qa0-bY



Special thanks to Eleanor Shakiba who's idea this was, and who spend long ours working on these videos. Thanks to Ian Ireland for editing and re-editing! And thank you to everyone who assisted by being interviewed and giving their time and sharing their experiences.

Radiotherapy Video

We have a present for you! With thanks to Dr Richard Shaffer for the lecture and the interview, and to Mr Ian Ireland for the editing. 
A video on Radiation Therapy for Dupuytrens and Ledderhose. 
 
We attempted a Teams patient meeting last Saturday. It worked, and I am planning to do it again. if you're interested, send me your email address.
 
More news coming soon.
 

Wednesday, 29 April 2020

Help needed for research


Have you used a splint for your Dupuytren's? Did you like it or not?

We need your help for researchers trying to create a comfortable splint glove.

They want to do a telephone or internet interview with patients to find out what we love or hate about our splints and how the designs can be improved.

If you are willing to share your experiences with the Glove Team, check the top two document on link below, sign the consent form (electronic signature or just type your name and date) and email the consent form back to: Patricia Grocott on patricia.grocott@kcl.ac.uk or Tanya Graham on tanya.graham@kcl.ac.uk

 

The files can be downloaded as pdf's from this page:

https://dupuytrens-society.org.uk/charity/pdf-download-page/

 

We will also add them to our Facebook group


Saturday, 25 April 2020

2020 Dupuytren Award

The yearly Dupuytren Award has been given, this time two papers qualified, one in the basic research section and one in the clinical research section. We send warm congratulations to David Izadi and Thomas Layton, and to Anna Zachrisson, Allan Ibsen Sörensen and  Joakim Strömberg, and please keep up the good work! https://www.dupuytren-online.info/dupuytren_award.html

Research has taken a step back,but it has not stopped, in the worst case it has been temporarily halted and will continue as soon as lockdown restrictions ease off.
Meanwhile we are working on a new online project, I will tell more when we have done it!
Preparations for the conference will start again next year.

From the Dupuytren Research Group in America:
- The International Dupuytren Data Bank is in its fifth year and moving forward. Read about what we've learned, what's happening with blood test research, and how to confirm your contact information for the long-awaited IDDB update survey soon to go out:https://dupuytrens.org/2020-iddb-progress-and-findings/.
 
Dupuytren Zoom Discussion Groups are here - for patients, healthcare providers, and scientists. See what this can do for you:
 https://dupuytrens.org/zoom-dupuytren-discussion-groups/ 
 

Monday, 3 February 2020

Oxford Conference call and charity news

Check out the Oxford Conference! Early bird discount available, a grant available for young researchers, it's going to be soo good! Please send in abstracts, and register! https://dupuytrensymposium.org/
 
More news: Our website had some problems but it has been fixed, and the email addresses work again as well. As always if you feel something needs changing on the website, let us know.
 
Our Ledderhose Webinar was a success, all our webinars can be viewed here:  BDS YouTube
 
 
 

Saturday, 21 December 2019

A Ledderhose Webinar coming up!


Our New Years present to you:

We have started planning our Ledderhose Webinar! 100 attendees possible, you need to register via the link below. It will be Sunday 26th January 2020, at 4pm GMT. Speakers are listed below. Attendees from anywhere are welcome to attend, no restrictions.



Gary Manley - introduction, personal story, patients view, Ledderhose Blog

Dr Markus Maiden-Tilsen - GP perspective, ultrasound diagnosis and steroid injection?

Mr George Flanaghan - NHS and private options in the UK?

Dr Richard Shaffer-Radiotherapy when and what age/patient? Side effects, results?

Dr Eddie Davis- treatment options in the US including Verapamil and Hyaluronidase?

 

You are invited to a Zoom webinar.

When: Jan 26, 2020 04:00 PM London (= 16.00 hours GMT)

Topic: Ledderhose Disease

Register in advance for this webinar:


After registering, you will receive a confirmation email containing information about joining the webinar.