Since late 2024, there has been a global shortage of Pegasys, the interferon medicine used by many people living with MPNs. This is due to delays in building a new manufacturing site and gaining the necessary approvals. In the UK, the NHS arranged for patients to be prescribed Besremi as an alternative interferon. Besremi has…
Saturday 7 June 2025, 10 am – 4.30 pm (arrival/registration from 10 am with complimentary refreshments) Venue The Patrick G Johnston Centre for Cancer Research, Queen’s University Belfast. 97 Lisburn Road, Belfast, BT9 7AE This is an in-person forum, not online/virtual, it will not be live-streamed or recorded. This forum is an opportunity to meet…
We recently invited patients with MPNs on treatment, to complete an anonymous survey on a proposed study looking at the effect of changes in mutation levels in MPN patients on treatment. The survey is now closed and we thank you for your participation. Dr Jennifer O’Sullivan and Dr Alesia Khan, the study leads, have sent…
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…
Saturday 21 June 2025, 1.30 – 6 pm (arrival/registration 1.30 – 2 pm with complimentary pizzas and soft drinks) Venue: Clifford’s Restaurant, 140 Fetter Lane, London, EC4A 1BT THIS IS AN IN-PERSON FORUM NOT VIRTUAL/ONLINE The Young Patients’ Forum, for MPN patients aged 40 and under only, is an opportunity to meet with other young…
Research Funding – MPN Voice has a mission to encourage research for the benefit of MPN patients and has prior and existing research funding commitments, for example support for MOSAICC and for the Mithridate studies. Funding to support either the entirety or part of specific research projects will be provided through specific research funding calls. …
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…