MDS UK

News

  • MDS World Awareness Day – 25th October


    MDS World Awareness Day – 25th October 2014 MDS Patient Support Groups worldwide are preparing throughout this week to mark the day on Saturday, 25th October 2014. In the UK, patients and relatives are making use of our busy Facebook page to post pictures, messages and facts about MDS. In Ireland, our Irish group is […]

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  • Consultation on proposed changes to Cancer Drug Fund


    NHS England launches consultation on proposed changes to Cancer Drug Fund Standard Operating Procedures   Patients and individuals are encouraged to comment and respond to this important consultation. The deadline is the midnight on Friday 31st October. MDS patients have benefited enormously from the CDF to date, without which many patients would not have had access […]

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  • Cancer Drug Fund News


    28/08/14 – NHS England have announced the allocation of further funds for the Cancer Drug Fund (CDF) This is good news for cancer patients, whilst we are waiting to see how NICE will finally alter their appraisal system, following the recent consultation on Value Based Assessments (VBA). However – the CDF is only a temporary […]

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  • NICE gives preliminary approval for lenalidomide


    NICE – Lenalidomide appraisal 20/08/14 – NICE has now finally issued their FDA (Final Draft Guidance) for the use of lenalidomide (Revlimid) for del 5q MDS patients. NICE is now recommending the use of this drug within the NHS. This comes as a very welcome decision, after almost 18 months, requiring 5 meetings and the […]

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  • UK’s first – not for profit – hotel for sufferers of life-limiting illnesses


    When looking for a meeting location for our new local Patient Support Group in Bournemouth, we came across a very special hotel – the Grove. Not only does it cater exclusively for cancer patients – it is also a charity – and operates on a not for profit basis. MDS UK will now start holding […]

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  • Scientists discover new way to make human platelets


    Another fantastic discovery suggest that human platelets could be produced artifically through the use of stem cell technology. There is a number of benefits associated with the laboratory generated platelets of relevance to those who rely on frequent platelets transfusions. For more details read the full article on Bio-Medicine website (click here to access), also […]

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  • Pharma companies to share experimental compounds with UK researchers


    A ground-breaking collaboration project between Medical Research Council in UK and seven leading pharma companies has been announced, as drugmakers agreed to share data on their experimental pharmaceutical compounds. British academics will now be able to use pharma’s existing findings to further test these compounds and explore if they could be improved or used for […]

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  • Newsletter 5 is out!


    NEWSLETTER 5 – June 2014 We have just finalised our 5th edition of our MDS UK Newsletter. It is a bumper issue – with 16 pages – as we had a lot of information and news to cover. In the past, we had editions of 8 and 12 pages. We would appreciate your comments and […]

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  • 19th Congress of the European Hematology Association – 12th-15th June 2014


    19th Congress of the European Haematology Association (EHA) has taken place this year between 12th and 15th June in Milan, Italy. This event is set up for physicians and representatives of patient support groups to  promote excellence in patient care, research and education in haematology. As part of the Worldwide Alliance of national MDS Patient support […]

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  • NICE Lenalidomide appraisal


    NICE – Lenalidomide Appraisal – ACD – June 2014 NICE has issued their latest decision regarding the use of lenalidomide in del 5q MDS patients. Unfortunately, this is still negative, but it is not yet NICE’s final decision. Despite the introduction of a Patient Access Scheme, as well as further data and evidence of use […]

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