The video of the MPN Voice patients’ virtual forum – Post ASH 2024 update – held on 6 Jan 2025, is now available to view. The American Society of Hematology (ASH) conference serves as a pivotal platform for haematology professionals, attracting over 30,000 delegates and showcasing nearly 8,000 unique scientific abstracts, making it the largest…
Registration is now open for the virtual forum – Young People and Adolescents with MPNs – scheduled for Tuesday 21st January 2025, from 6 to 7:30 PM (GMT). The forum will feature presentations in French, Spanish, and English, utilizing AI-generated avatars to enhance the experience. We are thrilled to announce this virtual forum in collaboration…
As we approach the festive season, the MPN Voice Fundraising Team would like to extend our most heartfelt gratitude and warmest Christmas wishes to all our incredible fundraisers, supporters and community members. 2024 has been an extraordinary year of compassion, determination, and collective spirit. Your incredible efforts have not just raised vital funds, but have…
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…
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,…