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 &…
Interferon supplies for people with MPNs – update 04 Sep 24 Pegylated interferon alfa 2a (Pegasys) is currently in short supply in the UK and worldwide. This is because the licence to make the drug has passed from one pharmaceutical company to another, and there are delays while the new company sets up its manufacturing…
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…
Interferon supplies – Update 19 August 2024 For some time we have been aware that there are international shortages of interferon alpha, in particular pegasys (pegylated interferon alpha 2a). We have been liaising via our medical team with the national pharmacy and procurement teams looking at advice and options. This includes the possibility of using…
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…
We are aware that some countries may be experiencing a shortage in the supply of Pegasys Interferon and would like to reassure you various UK Health Bodies and MPN experts have this under review and that it is not an immediate problem in the UK. We will update further once we have more information.
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…