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Rarer Cancers Forum

Bearing in mind that there are only a small group of CML patients compared to some other cancers would it not be possible for an organisation such as the Rarer Cancers Forum to campaign on our behalf and on behalf of other lesser known cancers who are having issues with access to drugs. Having just checked their website there isn't even any info on the drugs that have recently been rejected by NICE.

Hi Karena,
NICE recognises the CML Support Group as a representative of CML patients in the UK. We have been asked to comment formally to NICE and will be doing so. I am meeting with 2 other Leukaemia organisations for a discussion on whether we can combine our submissions to NICE this coming Tuesday.

Best wishes,
Sandy

HI Sandy, I think everything you are doing is brilliant and its right that this group is the official representative but I just wondered why they don't seem to be campaigning or even carrying anything on their website - I guess because I paid to join them I feel they should be doing a bit more!