Survey in Europe – Measuring Quality of Life

London School of Economics Survey about how quality of life is measured and reported in Health Technology Assessments (HTA) 28/05/15 Another survey for patients and carers to take part. HTA organisations, such as for example NICE (National Institute for Clinical Health and Excellence) mostly use a questionnaire called the EQ-5D to measure the impact of […]

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TV programme on rare diseases

Tigress Productions looking for volunteers for programme on rare diseases – 28/05/15 We have been contacted by a TV production company – Tigress Productions – who are looking for patients with a rare disorder – and had problems getting diagnosed. MDS would be ideally suited for this, as many patients often take a while to […]

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EHA SWG “Symptoms and Quality of Life” Survey – please take part!

FOR THE ATTENTION OF MDS PATIENTS Please find below information about the new and exciting research project in quality of life of people suffering from haematological malignancies. Please help ensure MDS patients are sufficiently represented and take part as soon as possible, the results are needed very soon!   “The European Haematology Association Scientific Working Group […]

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New Deputy Chairman at MDS UK

MDS UK has a new deputy chairman – 21/05/15 We are very happy to announce the election of Russell Cook as a new Deputy Chairman for MDS UK. Russell has been a Committee Member since 2014, then Trustee and Director since early 2015. Russell had a life-saving stem cell transplant 3 years ago, to treat […]

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International Clinical Trials Day 2015 – 20th May

Each year, the International Clinical Trials Day, is celebrated around the world on or near 20th May to commemorate the anniversary of what is considered the first clinical trial – conducted by James Lind, a Scottish naval surgeon, in 1747 on the deadly disease scurvy. This day provides a focal point for international communication events, meetings, debates, […]

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NICE committees recruiting

NICE needs new patient/carers/clinical staff members for their guideline committee. This is a good opportunity to help shape future haematology services in the UK. Please contact NICE directly to apply and for specific queries – but please feel free to call us if you have general questions about NICE and how MDS UK has participated […]

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MDS UK running vests are in!

MDS UK running vests have arrived! To celebrate our record number of brave marathon and other sporty events, we decided to have these running vests made – for MDS to stand out in the crowds. This year we are so lucky to have 7 marathon runners – in Brighton and London: Jodie Cooper, Caitlin Limmer […]

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Russell’s stem cell transplant experience – new video

New video clip – Russell Cook’s stem cell transplant experience 05/03/15 We have uploaded a new video clip of our friend and new MDS UK trustee Russell Cook. He tells us in detail about his experience of his three stem cell transplants – two from an unrelated donor – which failed, followed by stem cells […]

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Aplastic Anaemia Awareness Day – 4th March 2015

Aplastic anaemia (AA) is a rare but serious acquired bone marrow failure disorder of considerable clinical similarity to the hypoplastic type of MDS.  In same cases AA  may also progress to MDS. Given the link between the two conditions we often collaborate with the the support group for AA patients – Aplastic Anaemia Trust. Together […]

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Daisy Turner – an inspirational young MDS survivor

Daisy Turner and her MDS experience   We are pleased to share the story of a very brave and inspirational young MDS patient – Daisy Turner. Daisy was diagnosed with MDS as a teenager and represents one of the uncommonly occurring cases of MDS in young people. However, her young age isn’t the only thing […]

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