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…
The video of the MPN Voice patients’ virtual forum, held on Thursday 16 May 2024, is now available to view. This online forum focussing on the My MPN Voice App features presentations from: Prof Claire Harrison, Guy’s & St Thomas’ NHS FT; Dr Patrick Harrington, Guy’s & St Thomas’ NHS FT; ANP Claire Woodley, Guy’s…
In Conversation with Gill Thomas, who talks to Nona about being diagnosed with ET in 2004 and now has MF. Gill tells Nona about experiencing symptoms of fatigue which impacted on her life, particularly when she was working full time and how speaking to a counsellor helped her to be able to take more control…
Big News for the MPN Community! The moment you’ve been waiting for is finally here! The My MPN Voice App has officially landed! Watch the info-video to see what it looks like. For our UK friends who registered their interest, keep a close eye on your inbox. Our onboarding team will be reaching out to…