Hello everyone It’s that time of year again for the round-up of the MPN Voice year. We have had a very busy and successful 2024 and want to thank you all for your amazing support. The My MPN Voice App – the only MPN app you’ll ever need! Launched earlier this year, the app will…
Monday 6 January 2025 4.30 – 6 pm (16:30 – 18:00 hrs) (GMT) REGISTRATION NOW OPEN! This MPN Voice ‘virtual’ forum will focus on Post ASH (American Society of Hematology) latest updates. The talks will be presented by: Professor Claire Harrison, Guy’s & St Thomas’ Hospital, London; Dr Jennifer O’Sullivan, Guy’s & St Thomas’ Hospital,…
The MAJIC-PV Study is now completed and the results have been published Researchers wanted to find out how well Ruxolitinib worked compared with the best available therapy as a treatment for people with PV who were at risk of developing blood clots that could lead to a heart attack or stroke. Specifically, the study looked…
In Conversation with The Steering Committee Members of the MPN Advocates Network. The MPN AN was founded in 2013 by representatives from several MPN patient support groups as a way of creating and maintaining collaboration between these organizations and providing a platform for joint activity. MPN AN is a leading international organization that operates for…
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…
In line with national recommendations, we do not mandate Covid testing or wearing of masks for our meetings. However, we do ask that all attendees follow common sense precautions, not attending if you have active symptoms of a potentially infective illness, for example, respiratory or gastrointestinal or other. If delegates do wish to wear masks…
We are very pleased to advise that NHS England has confirmed that Besremi is now available as a treatment option for specific people with MPNs – essential thrombocythaemia (ET), polycythaemia vera (PV) or myelofibrosis (MF) and for the duration of the Pegasys shortage. Doctors can now consider switching to the use of Besremi as an…
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…