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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MDS Patients’ Poems on Blood Cancer Awareness Month

By Kate D. Friendship is my medication. A hug, a look; language that is not used or known by those who are not in the know; caught up in the new jargon that this disease offers us. My despicable cancer has enabled new friendships, renewed old and erased others. Around coffee cups we sit, or […]

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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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Support Team MDS at the Great North Run on September 8!

Taking place on on Sunday 8 September 2019, the Great North Run is the largest half marathon in the world, taking place annually in North East England each September. And we have an amazing team running for MDS UK Patient Support Group: Kathleen Young Angela and Shari Stirling Lindsey Hall Tanya Ferris Alexander Bird Mike Leigh […]

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