MDS World Awareness Day – 25th October

                                    MDS World Awareness Day – Preparations for 2015 We are preparing for MDS Day 2015.  Do contact us if you’d like to participate in any events around the country to mark this international awareness day for Myelodysplastic Syndromes. See below for MDS day 2014 – in the UK and in other countries. MDS World […]

Read full story

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 […]

Read full story

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 […]

Read full story

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NICE – Lenalidomide appraisal 20/08/14 – NICE has now finally issued their FDA (Final Draft Guidance) for the use of lenalidomide (Revlimid) for del 5q MDS patients.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 […]

Read full story

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 […]

Read full story

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 […]

Read full story

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 […]

Read full story

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 […]

Read full story

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 […]

Read full story
Free donations by shopping