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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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Results of the MDS Petition to get fair treatment for MDS patients:
As you may be aware, on 4 March 2010, NICE announced its final decision not to recommend the use of azacitidine within the NHS. That decision has been appealed on 1 June by a number of professional groups, charities and the drug’s manufacturer. We are awaiting the decision of the Appeal Committee, chaired by Sir Michael Rawlins.
The members of the UK MDS Forum and MDS UK Patient Support Group 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 MDS UK Patient Support Group have made their views known to NICE during the review process.
This was the text of our petition: We the undersigned petition the Prime Minister to ensure that people experiencing MDS receive care comparative with that available in most other European countries.
The petition was presented to parliament on 17 May 2010. We collected 688 signatures and hope this sent a clear message to the government and NICE ahead of the azacitidine appeal hearing. The petition was raised by Professor Ghulam Mufti, Chairman of the UK MDS Forum, on behalf of The MDS community in the UK, both patients and clinicians.
Thank you to all of you who signed.
You can view photos of the group delivering the petition to Number 10 on www.mdspatientsupport.org.uk
For more information and see how you can help further please click 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 23-June-2010
© UK MDS forum 2010