In Conversation with Craig Sowerby, who talks to Nona about his PV, when it was diagnosed and the treatment he has been receiving to manage it and why he decided to fundraise for MPN Voice, to raise awareness about MPNs and funds to support us. Craig recently completed a cycle ride from John O’Groats to…
The video of the MPN Voice patients’ virtual forum, held on 16 Oct 2024, is now available to view. This online forum focussing on MF features presentations from: Dr Andrew McGregor, Consultant Haematologist, Newcastle-upon-Tyne NHS FT, Dr Donal McLornan, Consultant Haematologist, UCLH, London, Dr Anna Godfrey, Consultant Haematologist, Cambridge NHS FT and Dr Alesia Kahn,…
We are delighted to announce that NICE (the National Institute for Health and Care Excellence) has recently released guidance recommending fedratinib as an option within the NHS for treating disease-related splenomegaly (enlarged spleen) or symptoms of myelofibrosis in adult patients who have previously been treated with ruxolitinib and for whom momelotinib is unsuitable. This positive news follows a detailed appraisal…
In conversation with Prof Claire Harrison, Guy’s & St Thomas’ NHS FT, who clarifies the situation regarding the temporary shortage of Interferon, which is due to the manufacturing rights of Interferon transferring from Hoffmann-La Roche to Pharma& and the commissioning of a new manufacturing plant. Prof Harrison stresses that the current shortage is temporary and…
The video of the MPN Voice patients’ virtual forum, held on 11 September 2024, is now available to view. This online forum focussing on skin cancer features presentations from: Dr Jonathan Lambert, Consultant Haematologist, UCLH, London and Dr Elizabeth Kulakov, Consultant Dermatologist, UCLH, London. Plus a Q&A session chaired by Prof Claire Harrison, Guy’s &…
The NCPE, the body that assesses and recommends drugs for use by the health services in Ireland, has recently released initial advice following their assessment of ropeginterferon alfa-2b (Besremi) for the treatment of patients with Polycythaemia Vera. As part of that assessment process MPN Voice made a patient group submission highlighting the benefits of Besremi…
In Conversation with Tobe Aleksander, who talks to Nona about her PV, when it was diagnosed and the treatment she has been receiving to manage it and why she decided to take part in the Mithridate Study. This is part 1 of a series of 3 conversations that Tobe and Nona will have about Tobe’s…
Were you diagnosed with an MPN (Myeloproliferative Neoplasm) before the age of 40? We want to hear from YOU! Your experiences are invaluable in helping us improve our resources and support for young MPN patients. Please share your thoughts on our latest leaflet – read here – and take just 2 minutes to complete our…
In Conversation with Mark Taylor, who talks to Nona about his PV and being a volunteer with MPN Voice, building up and maintaining the social media platforms. Mark begins by telling Nona that as a military air traffic controller he is subject to annual medicals, and following blood tests, he was diagnosed with JAKII positive…
In Conversation with the My MPN Voice app team – Dr Patrick Harrington, Debbie Street and Mark Taylor. The team talk to Nona about the recently launched My MPN Voice app: the objectives and goals of the app and associated research study that patients will be taking part in, via the app and the wearable…