UPDATE 16 September 25 NOW FULLY BOOKED FOR ATTENDING IN-PERSON. REGISTRATION FOR LIVE STREAM STILL OPEN! Registrations are now full for in-person places but there is still the opportunity to register for the live stream. WAITING LIST for attending in-person – If you would like to be added to a waiting list for an in-person…
Dear MPN Voice community We are inviting people living with Polycythaemia Vera (PV), Essential Thrombocythaemia (ET), or Myelofibrosis (MF) who have received treatment with interferons (Pegasys or BESREMi) to take part in a short, anonymous survey. This important study aims to gather patient experiences during the recent international interferon shortages. The findings will help inform…
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…
Take part in a pharmaceutical market research study on the myelofibrosis patient journey About this study The study is sponsored and funded by a pharmaceutical company. MPN Voice have been paid for their consultancy work to contribute to the design of the market research and help with recruiting eligible participants. The study, conducted by Ipsos,…
NIHR’s Be Part of Research registry We would like to share this blog with you, from the NIHR Chief Executive Officer and DHSC Chief Scientific Adviser Professor Lucy Chappell, who reflects on the vital role of participants in health and care research and how the NIHR’s Be Part of Research registry will help transform the…
The video of the MPN Voice patients’ virtual forum, held on 3 July 2025, is now available to view. About EHA – a global network actively collaborating with national and international medical associations and societies, advancing haematology education across Europe. The EHA congress is an annual event for clinicians, researchers and other professionals in the…
REGISTRATION OPENING SOON! We’re heading back to London for the MPN Voice Living with MPNs Day – a powerful day of connection, learning and hope for anyone affected by myeloproliferative neoplasms (MPNs). Whether you’re living with ET, PV, or MF, supporting a loved one, or simply seeking the latest updates on clinical trials and treatments,…
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…
MPN Voice is delighted to confirm that we will again be running our flagship “Walk to Support” event in September 2025 which also coincides with Blood Cancer Awareness Month and MPN Awareness Day which is 11 September 2025. You can walk at any time to suit during this month! During this very special month we…
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…