Since coming across this page http://dupuytrens.org/DupPDFs/dirlist.htm of the Dupuytren's Foundation I have spend a lot of time updating my Dupuytren's library. I now have over 1,400 articles and my personal Mendeley account is full. Fortunately they gave us a year free group account for the charity, and that contains 2 GB so far, and can go up to 100 GB so I can continue collecting for a while!

On a sad note: our chairperson Judith has decided to step down for personal reasons, so now we are down to 2 trustees. We have put feelers out to see if some of the people who helped us when we started the charity would be willing to step in, if not there will be a public appeal. For now we will wait a few weeks for any replies, but any volunteers who would like to be involved please contact us through the website or facebook.

NICE have to decided to go ahead with the appraisal of Xiapex, which means they are going to decide if it should be available on the NHS or not. So far they have not taken any of our comments or suggestions on board, but we'll keep trying. They don't expect to decide anything before 2015, so don't get excited folks! lol.

We have a beautiful picture on our website, courtesy of Megan Lindquist. Lovely cheerful waving hands. Dupuytren's patients are a good bunch.

That's it in a nutshell for our news, I will keep you all informed if anything else happens.

Oh and Wigan won the Challenge Cup! YEAH!!!

Another big step forward for the website http://www.dupuytrens-society.org/index.html .

We finally have the new layout up and running, now we just need to find all the faulty links etcetera in this one, and that means going through the whole site, checking everything.. Gary has promised to make a start, and I am grateful to him.

Apart from that we have been working on sharing documents and annotations, Mendeley is a very useful program but it would seem both my and Judith's virus scanners/ firewalls have problems allowing it access all the time. So more wrinkles to iron out there. But I'm sure now my laptop is working almost normal again ( that's why I have not written a blog for a while, it suddenly kept freezing up halfway start-up, turned out the last virus scanner update had corrupted something, so it needed registry repairs and a new virus program- no more free ones for me for a while!)  we will be able to get on with our list of urgent things to do, and maybe even the less urgent or longterm plans.

Auxilium have as from May taken overmarketing Xiapex, they are the manufacturers but so far Pfizer has marketed it in Europe. So that's a big change, we said our goodbey's to our contact at Pfizer and Judith and I have already met our new contact at Auxilium when we were at the NICE meeting. We'll wait and see how good the contact will be and what they can do for Dupuytren's patients, but they seemed knowledgeable about the condition and related problems like Ledderhose, frozen shoulders, dorsal nodules, Peyronie's etc. And even about cellulite, as there is a trial using Xiapex for that. Maybe once plastic surgeons start using it the cost will come down? Wishful thinking.

Time to go and enjoy some sunshine, it is a bank-holiday weekend and my garden is crying out for some attention.

Anna