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Welcome...|
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The Forum was established some three years ago with the remit to increase the awareness of MDS through education, setting up regional MDS registries and increasing the recruitment of MDS patients to National and International trials throughout the UK. We hope that you find the web site useful and would welcome suggestions for additions to the site. We also strongly encourage colleagues from around the UK who are interested in the clinical and scientific aspects of MDS to join The Forum and help to make it a vibrant and inclusive organization. Dr Dominic Culligan , website co-ordinator on behalf of the UK MDS forum |
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Sign the MDS Petition to get fair treatment for MDS patients:
As you may be aware NICE is presently looking at whether or not the drug azacitidine should be made available for patients with MDS treated by the NHS in England. Disappointingly, the provisional recommendation by NICE is not to recommend the use of azacitidine within the NHS. The review process is ongoing and the final decision will be made available in November 2009.
The members of The UK MDS Forum and Patient Forum believe strongly that azacitidine should be available on the NHS for appropriate patients with MDS based on the very encouraging clinical results achieved in trials comparing azacitidine with other treatments. Members of The UK MDS Forum and Patient Forum have made their views known to NICE during the review process.
You can help by completing this petition to parliament in support of this very important development in the care of some patients with MDS or in other ways listed in the petition. The petition has been raised by professor Ghulam Mufti, Chairman of The UK MDS Forum on behalf of The MDS community in the UK, both patients and clinicians. We hope as many as you as possible will feel able to support this petition and help over turn the provisional NICE decision.
The petition can be filled online here.
This website is still being developed, and we would be delighted to receive suggestions for content and improvement, notification of corrections etc at mds@hartleytaylor.co.uk.
UK Registered Charity No. 1111209
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Please send your comments to dominic.culligan@nhs.net
This page last updated on 13-Feb-2010
© UK MDS forum 2010