Don’t miss our Patient and Family Forum on Friday 22nd March!

The next MDS UK Patient and Family Forum will take place in Harrogate, UK on Friday 22nd March, 2019 9.45 am – 16.00 pm It will be an invaluable opportunity for those affected by MDS to hear about the latest developments in MDS research and treatment. This FREE event will be held at the Crown […]

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MEDI4736: Clinical Trial Open to Recruitment

SUB-TYPE OF MDS: Patients who have previously received a hypomethylating agent (eg. Azacitidine, Decitabine) SEVERITY OF MDS: Intermediate-2 or High risk NAME OF DRUG: Durvalumab, Tremelimumab, Azacitidine Aims and benefits: This is a Phase 1 study for patients who have previously received a hypomethylating agent. Durvalumab is a monoclonal antibody directed against programmed cell death […]

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How is Quality of Life in patients with Myelodysplastic Syndromes (MDS) measured?

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? In this article David Steensma, MD FACP at the Dana-Farber Cancer Institute and Harvard Medical School, Boston, Massachusetts USA discusses how to incorporating the Patient’s Voice into MDS Care and Research. Measuring quality of life: how to capture […]

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Living with MDS: Top Tips to Improve Your Quality of Life

Having MDS will have impact on your daily life. Each person will cope in their own unique way. Not everything in this gallery will apply to you, but there might be feelings that you are familiar with. It is hard to directly “change an emotion”, while thoughts and behaviours are more easily changed. We hope […]

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Bone marrow donor drive at RAF Coningsby

On Thursday 22nd of November MDS UK was represented at a bone marrow donor drive at RAF Coningsby alongside the bone marrow donor charity, DKMS. The event was prompted by the husband of Emma Sheldon, Adrian Cooper, following his wife’s diagnosis of MDS. As a great number of patients will know, the initial emotions that […]

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MDS UK Patient Support Group Newsletter – November 2018

Read all about: Patient’s Stories: Kes Grant ‘Coping with long stays in hospitals…’; Andrew Scott Married to MDSDS; Tilly Tilbrook ‘How I felt about losing my hair…’; Christina Fowler ‘Decisions, decisions…’ Research: Prof D Wiseman Chronic Myelomonocytic Leukaemia (CMML), Prof D Steensma, Measuring quality of life; Prof T Chevassut The effects of vitamin C, Raqeebah […]

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Catch up on the Cabbage Patch 10 Mile Race 2018: The Highlights

By Russell Cook, runner, ex-MDS Patient and Deputy Chairman Trustee & Director of MDS UK Patient Support Group Sunday 14 October saw MDS UK represented at the iconic Cabbage Patch 10 mile race. You are probably wondering why it’s got such a funny name! Well, it’s named after the Cabbage Patch Pub in Twickenham, a […]

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