Eden organised a fun Cèilidh Fundraising Event in aid of MDS UK

On the 16th October Eden Sheldon organised a fantastic Cèilidh Fundraising Event in aid of our charity. The evening was a lot of fun and Eden managed to raise an amazing £271.21! Eden told us she is looking forward to doing some more events in the future, which is immensely generous of her. We are […]

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MDS UK Patients’ Poems on MDS World Awareness Day

The 25th of October is MDS World Awareness Day Throughout the day, MDS UK and the international umbrella organisation MDS Alliance will posting on social media moving poems by our dear MDS UK member, Kate D, and other MDS UK members, written on the theme of living with Myelodysplastic Syndrome.  by Kes Grant Myelo Dysplastic […]

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Chemotherapy at home: less visits to the hospital and better quality of life

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? Written by Janet Hayden – Lead Myeloid Clinical Nurse Specialist – King’s College Hospital MDS specialist nurse Janet Hayden gave two talks at our recent London Patient meeting at King’s College Hospital. The first one was a report about […]

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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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