Missed the Birmingham MDS Patients & Family Forum? Catch Up Online

The latest MDS UK Patient and Family Forum took place in Birmingham on the 4th of February. It was an invaluable opportunity for those affected by MDS to hear about the latest developments in MDS research and treatment. Those attending the forum took part in a variety of workshops and sessions delivered by experts and […]

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Quality of Life is an Important Treatment Goal in Patients with MDS

In this presentation from the 2016 “European Focus on Myeloproliferative Neoplasms and Myelodysplastic Syndromes”, Dr. Fabio Efficace discusses the importance of quality of life as a treatment goal in myelodysplastic syndromes (MDS) Dr. F. Efficace discusses importance of Quality of Life as Treatment Goal in MDS When latest genetic analysis and therapeutic strategies are incorporated into MDS […]

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Researchers find new way to target blood stem cell cancers

Researchers designed an antibody that recognises and destroys CD99-covered leukemia cells while sparing normal blood stem cells This is a microscopic image of a leukemia cancer stem cell (Credit: Montreh Tavakkoli) with normal DNA coloured in blue. CD99, those green-coloured spots, is a protein-sugar molecule, which occurs more frequently than normal on stem cells responsible […]

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How successfull can a clinical trial be? By Shirley O’Brien

How a clinical trial gave me my life back after MDS and AML Five years ago, my spouse and I had settled into our dreamed-of retirement. But on Feb. 6, 2012, I was diagnosed with myelodysplastic syndrome (MDS). Because I was in my early 70s, a bone marrow transplant wasn’t my best option. What happened […]

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Young patients denied second chance for life by NHS England

Blood Cancer – the issues around the highly complex topic of 2nd stem cell transplants. Early in 2016 a MDS patient was denied a potentially life- saving 2nd bone marrow transplant despite showing a good chance of being cured by this 2nd treatment. After 4 months of waiting, spent in and out of hospital, while […]

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How to involve patients in their own care

Support patients to manage their condition better Evidence tells us that when patients are actively involved in their own care, treatment and support can improve outcomes and experience for patients. How to get involved Everyone involved in care should advocate for the experience, voice and presence of patients, carers and the public to make a real […]

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What is CAR T cell therapy? Learn about how this immunotherapy works

CAR T cell therapy aims to boost the immune system to attack tumor cells Cell therapies, sometimes called “living therapies,” are an especially promising and rapidly growing area of cancer research. One approach that’s been pioneered by Memorial Sloan Kettering researchers, led by investigator Michel Sadelain, is called CAR T cell immunotherapy. This type of […]

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The European MDS Registry: learning about the ‘real’ MDS patients

Research FOR Patients For an informed and empowered opinion and an improved consultation Have you made your clinical paper accessible yet? What is a clinical Registry? In order to develop new drugs to treat MDS, clinical trials are mandatory, typically testing the new drug against the treatment that is considered to be the standard at […]

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Clinical data on new medicines is now open to patients and researchers

Researchers and patients can access thousands of pages submitted by pharmaceutical companies As of the 20th of October, the European Medicines Agency (EMA) gives open access to clinical reports for new medicines authorised in the European Union. For every new medicine, citizens, including researchers and academics, will be able to directly access thousands of pages […]

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