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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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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Message from MDS UK team – to help each other get through the next few weeks. Please stay home unless told otherwise by your clinical team. A letter should have been sent to you with instructions for your ongoing care. If you haven’t been contacted, you can register on gov.uk If you feel unwell – call […]
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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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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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- 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
- SEVERITY OF MDS: AML
- NAME OF DRUG: UCART targeting CD123 positive leukaemia cells
- 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
- SEVERITY OF MDS: AML
- NAME OF DRUG: Lentivirus Transduced Acute Myeloid Leukaemic Cells (AML) that express
B7.1 (CD80) and IL-2 (AML cell vaccine)
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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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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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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