Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? TP53 gene mutations or chromosome 17 loss which results in TP53 deletion is present in up to 20% of MDS patients. Therapies for these patients have been relatively unsuccessful in delaying the progression of the disease. Emerging treatments […]

MDS UK has teamed up with the NCRI MDS subgroup (National Cancer Research Institute), the UK MDS Forum (National MDS clinical experts group), and created a survey for MDS, CMML and AML patients and caregivers. This national survey is about your perspective and experience of the COVID-19 pandemic generally the clinical care and support you […]

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? A recent article in the American Society of Hematology (ASH) Clinical News has identified how, for too many years and despite its unique clinical and biological characteristics, CMML (Chronic Myelomonocytic Leukaemia) has been treated as a form of […]

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 […]

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 […]

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 […]

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 […]

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? Myeloid Gene […]

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? If you are an MDS patient, it is important to find out about scientific research, and to know about ways you can contribute, as new treatments or improvements may come out of research. Clinical trials are one way […]