Myelodysplatic Syndromes – Advice Letter – COVID-19 (coronavirus)

TO ALL MDS PATIENTS AND THEIR FAMILIES The government has lifted some shielding measures. Read here the government updated advice. There is still limited data on the impact of these measures. We therefore emphasize, as the guidance says, that people remain vulnerable and should continue to take precautions. See the first paragraph of the government […]

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MDS UK Patient Support Group Newsletter – March 2020

Read all about: Patient’s Stories – Living with MDS:  Andy Veitch, Kevin Dwyer, Graham Cheyne, Stephen Rhodes  Patients’ Poems – by Chris Davis, Kes Grant, Kate D and Shareen Vouvray. Editor’s Note: The poem “Heavy Luggage” was written by Shareen Vouvray. We do apologise for wrongly attributing it to Chris Davis on our Newsletter. Research […]

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MDS the Coronavirus (COVID-19): 15 Frequently Asked Questions

The questions below are transcribed from the AAMDSIF webinar which took place on March 13, 2020 with Dr. Mikkael Sekeres and Dr. Isabel Schuermeyer from the Cleveland Clinic, edited for clarity and brevity. Thanks to our colleagues from AAMDSIF for sharing this with us. With respect to the guidelines for your specific case, the NHS […]

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Coronavirus (COVID-19) Webinar – Watch the recording

Dear all, In view of the many questions faced by all regarding coronavirus, our colleagues in the USA organised a free webinar last Friday, March 13, 2020 about the emergency of COVID-19 and the impact on bone marrow failure disease patients. To watch the recording, please follow this link: Webinar Recording The AA/MDS Foundation will […]

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UCART123 – Clinical Trial Open to Recruitment

  1. SUB-TYPE OF MDS:Patients newly diagnosed with CD123 positive adverse genetic risk acute myeloid leukaemia (AML), including patients with CD123 positive AML secondary to MDS
  2. SEVERITY OF MDS: AML
  3. NAME OF DRUG: UCART targeting CD123 positive leukaemia cells
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RFUSIN2-AML1 – Clinical Trial Open to Recruitment

  1. SUB-TYPE OF MDS:Patients AML (acute myeloid leukaemia) who fail to enter morphological remission or have persistence of cytogenetic abnormality following intensive combination chemotherapy at day+100 post-transplant
  2. SEVERITY OF MDS: AML
  3. NAME OF DRUG: Lentivirus Transduced Acute Myeloid Leukaemic Cells (AML) that express
    B7.1 (CD80) and IL-2 (AML cell vaccine)
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Yorkshire Patients’ Group

Support, Information, Awareness & Campaigns for those affected by Myelodysplastic Syndromes Come and join this brand new group in the Yorkshire region! Patient Brian Poulter and his wife Jenny have just started this group in Yorkshire. All local patients are welcome to attend, as are relatives and friends. This is an opportunity to get to […]

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A Myelodysplastic Syndromes Conference in April will discuss progress in diagnostics and treatment

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? Chaired by MDS experts Pierre Fenaux, Uwe Platzbecker, Mikkael Sekeres this prestigious MDS conference will be held in the Mandelieu Congress Centre in Mandelieu-La Napoule, France. Until recently, information on the biology of MDS and the options available […]

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Midlands Patients’ Group

Support, Information, Awareness & Campaigns for those affected by Myelodysplastic Syndromes Come and join this brand new group in the Midlands region! A few words from Sophia, Midlands Group Coordinator: “I started to learn more about MDS following my Grandad’s diagnosis back in 2017. Looking back on this period I recall the uncertainty and isolation […]

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