In this vlogcast, Dr Kathleen McHugh shares her talk/presentation – Psychological adjustment after diagnosis of MPN; coping with uncertainty. The talk focuses on coping with a serious illness diagnosis, particularly for newly diagnosed patients and their families. Dr McHugh uses analogies and practical advice to help patients understand and manage their emotional responses to…
The vlogcast features Dr Patrick Harrington, Consultant Haematologist, Guy’s & St Thomas’ Hospital, discussing the development and progress of an My MPN Voice app designed to help patients monitor their myeloproliferative neoplasm (MPN). The app, launched in April 2024, has over 300 users who track their symptoms and biometric data using a Withings smartwatch.…
Are you aged 18-39 and living with a MPN? Join our study to share your experiences and help shape the future of support for young patients. We would be delighted if you would consider taking part in a study focusing specifically on young people’s experiences of living with a diagnosis of MPN. Very few studies…
We are delighted to announce that the recordings of the Young People and Adolescents with MPNs virtual forum are now available to view. The forum was a collaborative effort with our colleagues in Vivre avec une NMP, using AI-generated avatars for simultaneous transmission of the clinicians’ presentations in French, Spanish and English, alongside other sessions…
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…
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…
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,…