MDS UK Patient Support Group

Invitation to share your MDS story with this new project: Life beyond Limits.
Please check the website – we hope you can help raise awareness of MDS via this work.

Rare Diseases UK have been contacted by Julie Cook, a freelance journalist for women’s magazines such as Bella and Women’s Own, who has an interest in rare diseases. She writes for the health pages of these magazines and is interested in doing an article on a family affected by a rare disease that they would [...]

The Spring 2011 newsletter is now ready to view on the information material pagehere.

NICE – National Institute for Health and Clinical Excellence – finally recommend azacitidine is available through the NHS for intermediate 2 and high-risk MDS, AML and CMML for England and Wales. The MDS UK Patient Support Group, which has been in consultation with NICE during the approval process and campaigned on behalf and in conjunction with MDS patients across the UK for almost 2 years, welcomes this announcement.

Full details in the news page.

Only 200 patients helped by £50m fund for extra cancer drugs

Latest update on how the Interim Cancer Drug Fund will be implemented at your local Strategic Health Authority level.

Read NICE’s press release, as well as a further article in PharmaTimes

NICE to lose powers to decide on new drugs.

London, 26 July 2010 – The MDS UK Patient Support Group has welcomed the decision announced today by the National Institute for Health and Clinical Excellence (NICE) that it will re-appraise the use of Vidaza (azacitidine) in patients with higher-risk myelodysplastic syndrome (MDS)- a group of debilitating bone marrow diseases. Today’s decision by a NICE [...]

‘Cancer experts from more than 30 hospitals across Europe have joined a campaign to get an expensive life-extending drug on the NHS’, writes Daily Telegraph’s medical correspondent Kate Devlin.