Latest News
- May 2012 Windsor Walk
Please join us on the Windsor Walk on Sunday 13th May 2012. Enjoy the day out and pick-nick, bring friends, family, children, grand-children, neighbours, dogs – and get sponsored to walk to raise funds for MDS UK. We need you!
- Royal Parks Foundation Half-Marathon – ballot open until 26th Jan – hurry
Calling all Marathon runners! The ballot to get a place is now open for the Royal Parks Foundation Half-Marathon. Would you like to do a sponsored run for MDS UK ?
- Brighton Marathon runners 2012
Anyone with a place in the Brighton Marathon 2012 ? Virgin Money Giving have a competition to win a potential £500 if the runner uses their fundraising page. Closing date is 26 Febr 2012. Please forward to runners.
- Petition from a UK nurse
Petition from a UK nurse – Tracey Nelson – for good individualised patient care within the NHS. Please consider signing it. See also her entry on our Facebook page.
- Survey for patients – Jan 2012
This is a very short online survey initiated by the Rarer Cancers Foundation – requesting the views and opinions of people (patients, carers, friends) affected by advanced cancer. Please help by answering these few questions.
- Cambridge Regional Group – join!
Join the newly formed Cambridge Regional Group – contact us for details – and get a chance to meet-up every 3-4 months. Read more.
- MDS – 1 day conference for physicians
MDS Day conference for MDS physicians, scientists and clinical nurse specialists – 21/11/2011
MDS patients – please inform your local clinical staff of this event. - The Independent Supplement
The Independent supplement on Blood disorders – published on the 2nd September (not the 30th Aug as initially planned).
- NICE survey – please take part
NICE, the National Institute for Health and Clinical Excellence is running a survey about their work amongst the general public – and health professionals. Please do take part – even if you are not familiar with all aspects of their activities.
- Latest Newsletter
The latest newsletter is now ready to view by clicking on the image
- May 2012 Windsor Walk
Latest Events
30JanLondon Local Group - 30/01/12
Creation of a MDS regional group for patients in and around London - first meeting to take place at King's College Hospital at the Cicely Saunders Centre - between 4pm and 6pm. Share this information with your local hospital please. read more.
27JanOxford Forum - 27/01/12
The next regional patient forum in Oxford will be held on the 27th January. Times tbc. Please register to attend and share the information with your local hospital. read more.
02DecCambridge Forum - 2/12/11
Our annual patient forum in Cambridge will be held on the 2nd December. Starting 10.30am. Please register to attend and share the information with your local hospital. read more.
18Nov18th and 19th November - Special seminar on MPD’s for physicians/nurses/patients
We would like to invite clinicians across UK and Ireland with Myeloproliferative Disorders interests to attend this informative conference with International speakers and UK experts.read more.
11OctExeter Regional MDS Patient meeting
The Exeter Regional MDS Patient meeting took place on the 11th October 2011. Next one in 2012 - involving Plymouth.Read more.
08OctLeukaemia and Lymphoma Research open days
Leukaemia and Lymphoma Research had two exciting research open days in October; Southampton on Saturday 8 October and London, UCL on Saturday 22 October. More to be scheduled in future.Read more.
30SeptLondon Patient Forum
Date confirmed and agenda added - Read more.
25SEPTBerlin Marathon
More wonderful and dedicated Celgene runners to take part in the Berlin Marathon in September 2011 – and fundraising for MDS UK again! Photos and details coming up. Thank you all.
06SeptPatient meeting – Oxford
Guest speakers will be Dr Vyas and a representative from the Maggie’s Centre.Read more.
09JulySouthborough School of Dance 2011 Charity Dance Show
We are delighted to announce that the Southborough School of Dance has nominated MDS UK as their nominated charity for their Annual Concert to be held at the Royal Victoria Theatre, Southborough, Tunbridge Wells, KENTRead more.
Media Coverage
Our campaign to appeal the negative decision NICE decision on Azacitidine has gained media coverage.
Discussion Forums
The discussion forum is open to MDS patients, family, carers, health care professionals and anyone affected by MDS. Register and connect to others with your sub-type of MDS.
Visit the forums now
MDS UK Patient Support Group on facebook. Please share the link widely to raise awareness of MDS
If you use the internet to buy goods online please consider using this scheme, which allows you to raise funds at no cost to you.Fundraising and Awareness
Laura's Cycling Challenge - October 2012. Read more and share the sponsoring link please here
Tonbridge and Kent event, 27th January 2012. To celebrate the Year of the Dragon, Tonbridge School, Kent have agreed to host a Charity Art Exhibition in their Tunnel Gallery at 6.30 - 8pm to help raise awareness and funds for MDS patients. Please support and attend. Read more here
Celgene has performed amazingly at the Berlin Marathon – with an entire team of runners – who managed to raise a very impressive amount of funds. Thank you! Read more here
Friends and family of my late husband Dan Crowley held a Golf Day in memory of him and to raise money for MDS. It was a very successful day and we were all amazed at how much money was raised. Read more here
More news on our amazing Judy Woolfenden, MBE – and MDS patient extraordinaire – who is off for a dog-sledding expedition in Sweden in a few weeks - as a special sponsored fundraiser. Read more here
David and Vikki drove to above the Arctic Circle in the depth of winter to raise money for MDS UK & Leukaemia Research. Read more about their adventure here
Judy Woolfenden - one of our amazing MDS patient in Warwickshire. More amazing plans coming up for 2012. Read more here
Graham Young climbed Mount Kilimanjaro in February to raise funds for both MDS UK and LLR. Read about his expedition here
Support for the Group
The MDS UK Patient Support Group is affiliated with the MDS Forum, the foremost UK organisation focused upon MDS, providing information and advice on the status and progress with MDS treatment in the UK. The MDS UK Patient Support Group is also supported by major pharmaceutical companies and other organisations.
The MDS UK Patient Support Group is affiliated with the MDS Foundation Inc., a multidisciplinary international organisation dedicated to sharing and improving MDS information and awareness between patients, globally.