MDS Latest News

ACE-536-MDS-002 (Luspatercept)

  1. SUB-TYPE OF MDS:Lower Risk MDS patients who require red cell transfusions but have not received Erythropoietin
  2. SEVERITY OF MDS: IPSS-R Very Low, Low or Intermediate Risk MDS
  3. NAME OF DRUG: Luspatercept
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September: Blood Cancer Awareness Month

September is #BloodCancerAwarenessMonth. MDS UK Patient Support Group, together with colleagues from Anthony Nolan, Bloodwise, CLL Support Association, CML Support, Leukaemia Care, Lymphoma Action, Myeloma UK, and Waldenstrom’s Macroglobulinemia (WMUK), joined Make Blood Cancer Visible, an awareness campaign sponsored by Janssen UK. This year, the theme is “Connecting the dots”, aimed at encouraging people to […]

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Familial/inherited MDS: rare but important to keep in mind

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? Written by Prof Jude Fitzgibbon, Prof Tom Vulliamy and Prof Inderjeet Dokal, Queen Mary University of London When a patient is first diagnosed with myelodysplastic syndrome (MDS), one of the most frequent questions posed is whether the disease […]

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MDS UK Patient Support Group Newsletter – June 2019

Read all about: Patient’s Stories – Living with MDS: Bergit Kuhle: B12 meets MDS; Michael Bower; Bernard E Burke; Shareen Rouvray – Part 1; John and Sandra; Poetry by Kate Research – Progress in the diagnosis and treatment of MDS: European MDS Registry, Prof David Bowen; Familial/inherited MDS: rare but important to keep in mind, […]

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Precision medicine is coming to the clinic to treat MDS

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? by Niels Jensen What is precision medicine? In precision medicine the basic idea is to develop a treatment for the specific cancer of individual patients based on a genetic understanding of their disease. Precision medicine has also been […]

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Team MDS at the Great North Run on September 8 2019

The Great North Run, which took place on Sunday 8 September 2019, is the largest half marathon in the world, taking place annually in North East England each September. An amazing team of 11 run for MDS UK Patient Support Group: Kathleen Young Angela and Shari Stirling Lindsey Hall Tanya Ferris Alexander Bird Mike Leigh […]

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Harmony: a European project with good news for MDS patients

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? The Harmony Alliance is a first-of-its-kind partnership of over 80 private and public organisations aiming at enabling better and faster treatments for patients with blood cancers such as MDS. Patient Organisations have a very active role in Harmony, and […]

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The new generation of MDS diagnostics: the Myeloid Gene Panel

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? Report from the MDS Education Forum that took place in November 2018. Interviews by Sophie Wintrich Chief Executive of MDS UK Patient Support Group. What are Myeloid Gene Panels and how are they used in MDS? One of […]

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