News
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Revlimid/Lenalidomide access in the UK
We need your help ! As announced recently – the drug Revlimid/lenalidomide will shortly be appraised by NICE to figure out whether it is cost-effective to use it in the UK for MDS patients who are transfusion dependent. Some of you will remember it took almost 2 years to get the last MDS drug – [...]
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Sharon Berger transplant update
Wonderful news – a donor was finally found for Sharon Berger who has been waiting since December for a transplant. We wish Sharon all the best with the transplant ahead and hope she will recover from it as quickly as possible. Her family and Anthony Nolan have done amazing work on getting more people from [...]
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EU drug approval for MDS sub-type del 5q
Great and long awaited positive news: Lenalidomide/Revlimid – the drug developed by pharma company Celgene has finally received approval for use in Europe – for transfusion dependent MDS patients who have the sub-type del 5q (also called 5q-). This is wonderful news, as approval has been long awaited by MDS 5q- patients all over Europe. [...]
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Bone Marrow Donations in UK Parliament
Bone Marrow donations will be discussed tomorrow in parliament – 06/03/13 – at about 12.30pm – after Prime Minister Question Time. This is tied to an Early Day Motion tabled since the 27/02/13 – suggesting that educational sessions be made available in schools for all 16-18 year olds – about how their bone marrow donation [...]
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MDS and sickness leave issue – Ireland
We have been alerted about an issue in Dublin – regarding an MDS patient employed by Dublin Airport Authority. We cannot comment – as this is going through the tribunals at the moment – but we wish to share the newspaper article on our website. We have no other information about this issue. Here is [...]
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Rare Disease Day – 28th February
Rare Disease Day – 28th February Check what events took place all over the world: http://www.rarediseaseday.org/article/about-rare-disease-day Check also the video done for the occasion: Lord Avebury – who often blogs about his MPD myelofibrosis also asked a question in the House of Lords on the occasion of Rare Disease Day: Lord Avebury: My Lords, [...]
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MDS Foundation Newsletter – Winter Edition
The next MDS Foundation Newsletter is also available – should you have missed out on it recently. Please use link below: fall2012newsletter-102712
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Newsletter 3 is online!
Our third Newsletter is now available online – with a update on clinical and research news from the ASH Congress (American Society of Haematology), from EHA (European Haematology Association), an article about Fatigue, fundrasing news and much more. Please click here to access the MDS_Newsletter_Jan2013 A paper copy is being sent to all our registered [...]
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Trials campaign – for publication of all results
The government has set up a Commons Select Committee to inquire into clinical trials and disclosure of data. To date, numerous trials are running, but not all results are always published or made available – especially the negative results. The general concensus amongst physicians, patient groups and researchers is that good or bad – all [...]
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Azacitidine research paper
Early research results about a better understanding of the way azacitidine works. Specifically about why azacitidine does not not in some people. This is encouraging, but very early research – much more work needs to be done to pursue these early results. Link to MDS Beacon site – which provides a patient friendly interpretation of [...]
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