Well here we are, nearly at the end of another very busy and successful year for MPN Voice. We have achieved such a lot!
Forums – the in-person and virtual online forums continue to be a success. It has been a pleasure to see familiar faces and meet so many new MPN patients and their family members at the in-person forums in: Oxford; Cambridge; Belfast; Cork; Nottingham; Inverness; Chester; Newcastle-upon-Tyne; Sheffield, and the first in-person forum in London for young MPN patients. We held 3 virtual online forums focussing on a variety of topics, including another ‘first’ for MPN Voice – the Young People and Adolescents with MPNs virtual forum in three languages. 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 conducted in English. The recordings in each language, plus an extra video featuring the clinicians’ presentations in Chinese, are available to view on the YouTube channel. We will announce details for forums in 2026 once they are confirmed.
The 9th annual Living with MPNs Day held on Sat 15th November was well attended, both in-person and online, allowing MPN patients, their family and friends to hear the latest news about trials and research; the My MPN Voice app; and ways to manage fatigue and much more. The videos for each session can be viewed on our YouTube channel. The date for next year’s Living with MPNs Day is 21st November and we will be hosting a day in York on 4th July – do put these dates in your diary.
Buddy support – our buddies are fabulous people who have supported many people with MPNs, not just the newly diagnosed, but others who have had their MPN for a while, and also partners/family members of someone who has a MPN. We would like to thank all our buddies very much for the wonderful support they have given to others throughout 2025. Being a buddy is very rewarding, if you would like to become one of our buddies to offer support and help to other people, or if you would like to have a buddy for support, please get in touch at buddies@mpnvoice.org.uk.
HealthUnlocked – the online forum for people with MPNs, where you can ask questions; offer support; get comfort from other people; share coping strategies and lots more, the forum is monitored daily by the MPN Voice admin and medical team to ensure accuracy and safety of information being exchanged. The MPN Voice community continued to grow during 2025, taking the current membership to 11,921. You can join our MPN Voice community here.
The Young Patient Network for people with a MPN aged 40 and under – bringing together and supporting young people with MPNs, a welcoming space where young patients can meet and connect with like-minded others, and receive information tailored to young patient experiences and challenges. The network emerged out of a recognition that being diagnosed with a MPN when you’re young can bring with it a unique set of questions, issues and concerns and currently has 565 members. If you’d like to be part of the Young Patient Network group on Facebook, you can request to join by clicking this link.
Social media – our presence on social media continued to grow this year with daily posts keeping our MPN community updated, informed and engaged. We now have almost 11,000 followers, up 25% on last year. You can find us on Facebook, Instagram, X (formerly Twitter) and LinkedIn.
Vlogcasts – Nona, co-chair of MPN Voice and a MPN patient herself, continued her very successful monthly vlogcast series of informal conversations with MPN patients and healthcare professionals.
The latest vlogcast is with Prof Claire Harrison and includes highlights of key developments in the MPN field, focusing on the American Society of Hematology (ASH) conference; MPN Voice’s 2025 achievements and looking ahead to 2026. Claire and Nona end their conversation sending their best wishes for peace, goodwill, and good health over the festive season to everyone. All the vlogcasts can be viewed here.
Advocacy – 2025 started with a concerted effort to explain to the NHS the difficulty that the shortage of Pegasys represented for many MPN patients. We worked alongside Blood Cancer UK and Leukaemia Care to lobby decision makers, and the result was an agreement to allow patients to be prescribed Besremi, a much more expensive form of interferon, until supplies of Pegasys resumed. We recognise the significant cost this decision caused to the NHS, but we are aware that some patients have done better with Besremi and, now that the Pegasys shortage has been resolved, we are in discussions about whether they may continue with Besremi.
We are continuing to look for opportunities to collaborate with MPN patient groups in other countries and, following the success of our Anglo-French webinar earlier this year, we hope to host another international event in 2026. We know that MPN Voice is one of the most respected patient groups in the world and, through our work with MPN Advocates Network, we work with groups in less developed countries to help create active patient communities. At the same time, through these collaborations, we learn a lot to help us develop our own work here in the UK.
Trials and Research – our commitment to support research and trials remains strong. Principle in this funding is support for the MyMPNVoice APP. Please do strongly consider signing up for this study, the wearable study is almost fully recruited but the digital/database aspect is really important. To use the app currently you need to be part of the study and a UK patient. Details on how to sign-up to be part of the study can be found here.
MPN Voice also continued to support many research projects, including: the MASCOT study, a registry and coagulation based study for MPN patients with a large clot affecting their liver; MITHRIDATE which is a first line study for 596 patients with PV; and MOSAICC which is a large epidemiology study. We are also funding studies to assess molecular response in more detail, reasons for skin cancer development and finally immune profiling for patients on momelotinib. Many healthcare professionals have benefited this year from ‘Fiona’s Fund’ set-up from legacies, to support the educational needs of clinical staff, prioritising nurses, pharmacists, psychologists and allied health professionals.
The My MPN Voice App – the only MPN app you’ll ever need! Launched at the beginning of 2024, the app allows you to track your MPN symptoms, capture your quality-of-life data, engage with your own health data in a different way and communicate and share the data with your own healthcare teams and access MPN Voice news and updates and connect with our community. Dr Patrick Harrington and Debbie Street gave an update on what we are learning from the app at the recent Living with MPNs Day, view their presentation here.
Trials and research studies benefit all of us with a MPN, if you would like to take part in a trial or a research study, please speak to your haematology team and take a look at this aspect of our website.
Surveys – we have undertaken several surveys this year. Amazingly, 1,385 people responded to the “Future of MPN Voice” survey, including 1,290 individuals living with MPNs. More than 1,000 people wrote an answer to the question “How has MPN Voice made a difference to you?” – and the overwhelming majority were extremely positive: Here’s just one answer: “Finding MPN Voice several months after diagnosis was the best thing I could have done. So much information and advice. It gave me courage to see a specialist and that in turn was wonderful. Correct diagnosis given and put me on the path for best medication for my needs. So made a huge difference. I rely on it to keep me in the company of other patients so I don’t feel too isolated and occasionally anxious and scared.” The quantitative data the survey generated was equally useful, and is already helping inform our strategy for the future. The responses show that patients consistently rate our information —especially our website — as their most important source of guidance, often above their consultants.
Donations and Fundraising – you have supported us so generously with donations and taking part in fundraising events throughout the year, the Fundraising Team were in awe of the variety of events. Your kindness and generosity is wonderful, and we thank you all so very much. If you would like to make a donation to show your support, please visit our JustGiving page.
A change in the team – at the end of the year we say goodbye to Maz who has been the administrator for 17 years, she is retiring to spend more time on her hobbies and travels. Debbie, who many of you already know from the Fundraising Team, will be taking over from Maz at the beginning of 2026.
All the team at MPN Voice are very grateful for your wonderful support, we really could not do this without you, and we are looking forward to 2026 and all the exciting ways that MPN Voice will continue to grow and evolve.
