New advisor for the BDS

While NICE is still deliberating, we have some good news: Mr Stephen Jeffrey LCSP of Ealing Massage Therapy http://www.ealingmassagetherapy.co.uk/Dupuytren-s-Massage.html   who has years of experience in massage therapy for Dupuytren's and is happy to share his protocol with therapists the country and indeed the world over has agreed to join our charity in an advisory capacity. Quite a coup!

The Peyronie's survey has finished, we had around 200 responses so that was really good. Thanks to all those who put their embarassment aside and answered the questions. The results will be used for the awareness campaign in a few months. Gemma is working hard on this.

The Dupuytren Foundation is still trying to recruit people worldwide to partake in their research, if you have not done so yet please sign up on http://dupuytrens.org/enroll-in-the-iddb/  

We have added a pinterest plug-in to our website, so anyone wanting to use Pinterest can do so.

Our first newsletter has gone out, if you don't want to miss the next one please become a member of the charity.  

Summertime

Time for an update, it has been a while.

Groningen: the conference was good, a lot of very clever people all discussing what they can offer patients and what research needs doing to improve the treatments. There are still distinct fractions, such as radiotherapists versus surgeons, but there was good conversation also between the groups so I hope the differences in opinion are getting less. After all we all want what is best to slow or halt the disease, never mind how it is done. Abstracts of the presented papers can be found online: http://dupuytrensymposium.com/program_2015.php  (scroll to the bottom) and the talks will be put on YouTube.

The Dupuytren's Foundation is hoping to set up a databank with samples from as many ppatients as they can get, to aid in identifying the cause of the disease. PLEASE HELP!! Go to this website http://dupuytrens.org/get-the-newsletter/  and register for the newsletter, they will let you know as soon as the study starts . It would mean having a bloodsample taken, that's all. Anyone with Dup's or Ledderhose in any country, please join.

Since then the website is being transferred, we found a good server but it means I can't update any pages untill the transfer is complete.

I have met up with Lorraine and Louise from Say Communications, Sobi has kindly agreed to fund a secretariat function for 2 days per month for the next 6 months, and Louise will look into funding, membership, a new logo, newsletters to GP's.. all these things we wanted for the BDS but did not have time to do. So all in all the BDS is moving forward. We have 350 followers on our Facebook page, and the Dup Ld and related conditions group is oding even better with 406 members.

All we need now is a cure!

Anna