In Conversation with Tobe Aleksander, who updates Nona, one year on from their first conversation, about her participation in the Mithridate Study. This is part 2 of a series of 3 conversations that Tobe and Nona will have about Tobe’s experiences on the study – part 1 enrolling and starting the study; part 2 mid-way…
In this vlogcast, Dr Jack Waldman shares his talk/presentation – Psychological Impact of MPNs – which he presented at the Patients’ Forum held in Inverness on Wednesday 3 September 2025. In this talk, Dr Waldman discusses the psychological impacts of living with myeloproliferative neoplasms (MPN). He covers common emotions people experience after diagnosis, such as…
Pegylated Interferon Alpha – Supply & Commissioning Update We are very pleased to let you know that the recent shortage of Pegasys interferon has now been resolved, and hospitals are beginning to receive normal supplies again. While Pegasys was in short supply, some people were prescribed a different interferon called Besremi to make sure treatment…
The vlogcast features Dr Patrick Harrington, Consultant Haematologist, Guy’s & St Thomas’ Hospital, discussing the new study on thrombosis risk in MPN patients using QRISK3 Score. Dr Harrington explains the research the team at Guy’s Hospital have done to see if a new way of assessing patients’ risk of thrombosis (clotting) called QRISK3, could be…
In this vlogcast, Neil shares his personal journey living with a MPN, beginning with his diagnosis of ET in 1994 and progressing to MF in 2023. He speaks candidly about the emotional and physical toll of his MPN, his experiences with treatment, and the ongoing decision-making process around a potential stem cell transplant. Their candid…
In this vlogcast, Prof Claire Harrison, Guy’s & St Thomas’ Hospital, London, speaks with Nona about considerations for MPN patients when travelling away from their home city and how to be prepared and cope with change if events cause disruption to travel. Overall, the discussion emphasizes resilience, practical planning and mental well-being to help MPN…
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.…
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…