MPN Voice

New Vlogcast: In Conversation with the 2026 London Marathon Team This month’s special edition of In Conversation with Nona brings together three familiar faces from the clinic at Guy’s and St Thomas’: Natalia, Claire, and Priya, as they prepare for a challenge unlike any other: the 2026 London Marathon, running in support of MPN Voice. Alongside teammates Jamie, James, Mel, Amy, and Anna, these dedicated clinicians are stepping far outside their comfort zones, swapping scrubs for running shoes to raise vital funds for MPN research and patient support. What you will hear in this conversation • Claire reflects on two decades of caring for MPN patients and how their resilience inspired her to take on her “biggest challenge” yet. • Natalia shares how fundraising helps deepen understanding of MPNs, from managing symptoms like fatigue to improving long term care. • Priya talks candidly about the emotional and physical reality of preparing for 26.2 miles and the “stubbornness” needed to keep going. • The team discuss how encouragement from patients in clinic becomes the fuel that carries them through the toughest training runs. MPN Voice is a small charity with a big mission, and we rely on the generosity and commitment of our community to fund essential research and support services. We are incredibly grateful to our clinicians for finding the time, energy, and heart to take on this challenge for the MPN community. 🎥 Watch the full vlogcast: linktr.ee/Mpnvoice How you can support the team The runners are aiming to raise an additional £4,000 to help fund MPN research and patient services. If you would like to cheer them on, please consider making a donation via their fundraising page, which is linked at the end of the video or via the QR codes throughout. #londonmarathon2026

💻 We are looking for a helper from within the MPN Voice community We are hoping to find a community member who can volunteer a little time to help us keep the MPN Voice website up to date. Our site runs on WordPress using the Kadence theme, and we would love support from someone who already has experience with this. ⭐ What we need help with • Posting news updates • Adding upcoming events • Sharing research updates • Light content edits when needed This is a small but very meaningful way to support people living with MPNs. Keeping our information current helps patients, families and clinicians stay connected with the latest developments. ❤️ Who we are looking for Someone who is comfortable using WordPress and Kadence, who enjoys helping behind the scenes, and who wants to make a positive difference for the MPN community. If you would like to help, please get in touch with us and we can talk through what the role involves...

MPN Voice Patients’ Forum – Galway Saturday 23 May 2026 | In person and live streamed We are delighted to invite you to our next MPN Voice Patients’ Forum taking place in beautiful Galway, with the option to join us online from wherever you are. This full day hybrid event is designed for anyone affected by ET, PV, MF and other MPNs, including family members and friends. It is a chance to learn, connect and hear directly from leading specialists and patient speakers. --- 📍 In person venue Galway Bay Hotel, The Promenade, Salthill, Galway, H91 W295, IE 🕙 Timings In person: 10.00 am to 4.30 pm Live stream: 10.30 am to approximately 3.30 pm The live stream will pause for lunch from 1.00 to 1.45 pm. Breakout groups will not be streamed for confidentiality. --- 💬 What the day includes • Updates on MPN research, trials and treatments • Sessions on managing symptoms and living well with an MPN • Talks from specialist haematologists and nurses from Galway, Cork, Dublin and London • Patient speakers sharing their personal MPN journeys • A live Q and A for both in person and online audiences • In person breakout groups for ET, PV, MF and a dedicated family and friends group • Complimentary refreshments and buffet lunch for in person attendees • No fee to attend You are welcome to join us in Galway from anywhere in Ireland or the UK. You are also very welcome to bring family members or friends with you. If travelling is not possible, you can join us online instead. --- 🎥 If you cannot attend live The forum will be recorded and the video will be available on the MPN Voice YouTube channel around 6 to 8 weeks after the event. Breakout groups will not be included for confidentiality. --- 🔗 Book your place Please register to attend in person or online using the relevant link here - linktr.ee/Mpnvoice We look forward to welcoming you on the day. #MyeloproliferativeNeoplasm #Polycythemiavera #Galway2026 #ChronicIllnessSupport #essentialthrombocythemia #polycythemiavera #myelofibrosis

A huge congratulations to Prof Claire Harrison on receiving the 2026 EHA Lifetime Achievement Award! As co‑founder of MPN Voice, Prof Harrison has shaped not only the scientific landscape of MPN research, but also the lived experience of thousands of patients and families. Her leadership in clinical trials, her extraordinary academic contribution, and her tireless advocacy have transformed understanding, treatment, and support for people living with MPNs. Yet what stands out most is her compassion, her approachability, and her unwavering commitment to keeping patients at the heart of everything she does. We are incredibly proud to celebrate this well‑deserved recognition. Thank you, Prof Harrison, for everything you continue to do for the MPN community... EHA (European Hematology Association) is a Europe‑wide (and increasingly global) community focused on improving the understanding, diagnosis, and treatment of blood cancers and other hematological conditions. It acts as a hub for collaboration, education, and scientific progress across the field. ehaweb.org/about-eha/eha-…

📣 Registration Now Open! Join Us at the MPN Voice Patients’ Forum – Cambridge Wednesday 29 April 2026 | 4–8 pm 📍 Venue The Turnstone Suite, Cambridge Rugby Club & Conference Centre Ellgia Fields, Grantchester Road, Cambridge, CB3 9ED We’re delighted to invite you to our next in‑person Patients’ Forum in Cambridge. This event is open to all MPN patients, wherever you live and whichever hospital you attend. If you’re able to travel, we would love to welcome you and your family and friends are warmly invited too. There is no fee to attend, and a complimentary buffet and refreshments will be available throughout the evening. 🩸 What to Expect Our programme includes talks from leading experts: Dr Anna Godfrey Dr Emma Gudgin Dr Wai Keong Wong Claire Woodley, Advanced Nurse Practitioner (Guy’s & St Thomas’) You’ll also hear from MPN patients sharing their personal journeys, followed by a panel Q&A. We’re also hosting breakout groups for each MPN type, giving you the chance to connect in smaller groups, share everyday challenges, swap tips, and meet others who truly understand. A dedicated family & friends group will run alongside these sessions, offering space for loved ones to talk, learn, and support one another. 🎟️ Book Your Place Registration is required to attend. Click the link here to secure your spot- linktr.ee/Mpnvoice We can’t wait to see you there and bring our community together for an evening of learning, connection, and support.

🗓️ SAVE THE DATE: MPN Voice Young Patients’ Forum 2026 London | Friday, 5th September 2026 Following the success of last year, we are looking to host another Young Patients’ Forum in London, and we need your help to make it happen! Being diagnosed with an MPN under the age of 40 brings a unique set of challenges. This forum is designed specifically for those aged 40 and under to connect, share knowledge, and receive information tailored to the young patient experience. 🧠 What to Expect We are currently shaping a program that reflects the topics most important to our younger community. Potential sessions may include: Clinical Updates: The latest news on MPN research and management. Navigating Life: Discussions around lifestyle, career, and the psychological impact of a chronic diagnosis. Specialist Topics: Insights into areas like fertility, pregnancy, and long-term wellness. Breakout Sessions: Dedicated spaces for ET, MF, and PV patients to swap tips, plus a support group for partners and friends. 📢 Express Your Interest To move forward with this event, we need to assess the level of interest from our community. This is not a formal booking yet but it is an expression of interest to help us determine if the event is viable. If you (and up to one guest) would like to attend, please let us know! Your feedback is vital in helping us plan a day that truly serves your needs. 🔗 Register your interest here: eventbrite.co.uk/e/mpn-voice-yo… Let’s keep the momentum building. Because no one should navigate an MPN alone -especially while you're still figuring life out. Join the Facebook Group here: 🔗 facebook.com/groups/mpnvoic… #MPNVoice #BloodCancerSupport #SaveTheDate #MyeloproliferativeNeoplasm #chronicallyawesome #essentialthrombocythemia #myelofibrosis #polycythemiavera #mpnsm

Webinar A pioneering CAR-T therapy targeting mutated calreticulin in myeloproliferative neoplasms (MPN) On February 4th at 7:00 pm (Madrid time), coinciding with World Cancer Day, an online webinar will take place focusing on an innovative line of research in myeloproliferative neoplasms (MPN): the development of a CAR-T therapy targeting mutated calreticulin (mCALR). This webinar is organised by MPN España. 📆Date: February 4, 2026 ⏰ Time: 7:00 pm (CET – Madrid time) 💻Format: Online webinar via Zoom This session aims to bring research closer to patients and families, explaining in a clear and accessible way how scientific advances may become future therapeutic options. The webinar will also be available in English, thanks to the support of the Global MPN Scientific Foundation (Global MPNSF). 👉 REGISTER NOW! Webinar topics During the session, the following topics will be covered: ● What Philadelphia-negative MPN are (essential thrombocythemia, polycythemia vera and myelofibrosis). ● Why mutated calreticulin (CALR) is a key target for new therapies. ● The development of a pioneering CAR-T therapy and the main preclinical results. ● The current status and design of the first clinical trial in humans. Speakers The webinar will feature: ● Dr. Maite Olave, Head of Hematology, Hospital Clínico de Zaragoza, and principal investigator of the clinical trial. ● Cecilia Pesini, researcher at the Aragón Health Research Institute (IIS Aragón), who will present the preclinical research conducted to date and ongoing work. This research forms part of her doctoral thesis within Dr. Ariel Ramírez Labrada’s team. ● Dr. María del Mar Mole, hematologist at Hospital Clínico de Zaragoza, who will explain the design of the clinical trial and its preparation for submission to the Spanish Agency of Medicines and Medical Devices (AEMPS). ● Dr. Ariel Ramírez Labrada, researcher at IIS Aragón, who will take part in the Q&A session. Register here - lnkd.in/ePHtrz29 #mpnsm

❤️ Love Your Blood – Red Bake Sale This February, we’re inviting our community to bake with heart and help raise life‑changing support for people living with MPN blood cancers. Valentine’s Day is all about love and what better way to show it than by celebrating the incredible work our blood does for us every single day. So gather your mixing bowls, dust off your favourite recipes, and join us for our Love Your Blood: Red Bake Sale and swap meetings for muffins this February. 🍓 Red‑themed bakes ❤️ Valentine’s treats 🧁 Cupcakes, cookies, brownies, traybakes - anything goes Every slice sold helps MPN Voice continue supporting patients, families, and research into Myeloproliferative Neoplasms. Whether you host a bake sale at work, school, home, or online, your kindness makes a real difference. 📅 Any day in February 📍 Anywhere you choose 🎁 Free info sheet available here linktr.ee/Mpnvoice For help and support email fundraising@mpnvoice.org.uk Let’s fill February with love, hope, and something sweet. Bake red. Share love. Support MPN Voice. #EssentialThrombocythemia #Myelofibrosis #PolycythaemiaVera #BloodCancerAwareness #MyeloproliferativeNeoplasms #bakesale

You’re Invited: MPN Voice Patients’ Forum – Oxford Tuesday 17 March 2026 4–8 pm - Holiday Inn Oxford, Peartree Roundabout, Woodstock Road, OX2 8JD Living with an MPN can feel overwhelming but you don’t have to navigate it alone. This March, we’re bringing patients, families, and experts together for an empowering in‑person forum in Oxford. Join us for an afternoon of connection, learning, and support. You’ll hear the latest updates from the Oxford haematology team, meet others who truly understand life with an MPN, and have the chance to ask questions in a relaxed, friendly environment. Whether you’re newly diagnosed or have been living with an MPN for years, this forum offers something valuable: shared experience, trusted information, and a welcoming community. You’re invited no matter where you live or which hospital you attend and you’re welcome to bring family or friends too. A complimentary light buffet and refreshments will be provided, and parking is completely free. Reserve your place today as booking is required to attend. 👉 Book here: linktr.ee/Mpnvoice

Now Available: MPN Voice Post-ASH Virtual Forum Recording Did you miss our live session? Good news, the full recording is now available to watch! Catch up on the very latest updates in MPN research and clinical practice, delivered by three of the world's leading experts fresh from the ASH (American Society of Hematology) conference. 🎙 The Panel: Professor Claire Harrison – Guy’s & St Thomas’ Hospital Professor Bethan Psaila – University of Oxford Dr Alesia Khan – Leeds Teaching Hospital Dr Pryia Sriskandarajah - Guys & St Thomas 🔍 What’s covered? This forum breaks down the complex research from the world’s largest haematology conference into clear, actionable insights for the MPN community. From new drug trials to evolving clinical practices, this is an essential watch for patients, carers, and healthcare professionals. Watch the full recording here: 🔗 linktr.ee/Mpnvoice Stay Informed: ASH is the leading global organisation for blood diseases, and our experts have brought the most relevant takeaways straight to you. #mpnsm

📣 SAVE THE DATE: Leeds In Person Patients’ Forum We are very happy to share that our Leeds Patients’ Forum will take place on 4 November 2026 from 1.00pm to 5.00pm. This event offers an afternoon of learning, support and open conversation for anyone affected by MPNs. It is a chance to hear from experts, meet others who understand the journey and take away practical insights that can make a real difference day to day. We are still shaping the programme and will share full details as soon as everything is confirmed. ✨ For now, please add the date to your diary. We look forward to welcoming you in Leeds. #MPNVoice #MPNCommunity #PatientsForum2026 #Leeds #RareButNotAlone

🗓️ SAVE THE DATE: Newcastle In Person Patients’ Forum We are very pleased to share that our Newcastle Patients’ Forum will take place on 9 October 2026 from 1.00pm to 5.00pm. This afternoon event will bring together patients, families and clinicians for a supportive space filled with learning, conversation and community. Whether you are newly diagnosed or have been living with an MPN for many years, this forum offers a chance to connect with others who truly understand the journey. We are still finalising the programme and speakers, and we will share full details as soon as they are ready. ✨ For now, please save the date. We look forward to welcoming you in Newcastle. #MPNVoice #MPNCommunity #PatientsForum2026 #Newcastle #RareButNotAlone

SAVE THE DATE - Llandudno In‑Person Patients’ Forum We’re very pleased to announce that we’ll be hosting an in‑person Patients’ Forum in Llandudno on 25 September 2026, from 1.00pm to 5.00pm. Our regional forums are a chance for patients, families, and clinicians to come together in a supportive, welcoming space to learn, share experiences, and connect with others who truly understand life with an MPN. We’re still finalising the programme and speakers, but we wanted to give you plenty of time to mark your diaries. ✨ More details will follow soon so stay tuned. #MPNVoice #MPNCommunity #PatientsForum2026 #Llandudno #RareButNotAlone

SAVE THE DATE - MPN Voice Cambridge Patients’ Forum 2026 We’re very pleased to share that an MPN Voice in‑person Patients’ Forum will be taking place in Cambridge 29th April 2026, from 4pm to 8pm. These forums are one of the most meaningful parts of our year - a chance for patients, families, and clinicians to come together, learn, connect, and support one another. And we’re thrilled to be bringing this event to Cambridge in 2026. We’re still finalising the programme, speakers, and registration details, but we wanted to give you plenty of time to mark your diaries. ✨ More information will follow soon so stay tuned. #myeloproliferativeneoplasm #polycythemiavera #essentialthrombocythemia #myelofibrosis #mpnvoice #bloodcancerawareness #rarecancer #chronicillness #chronicallyawesome #mpnsm

SAVE THE DATE - London “Living with MPNs Day” 🌟 We’re delighted to confirm that our flagship London Living with MPNs Day will take place on 21 November 2026, A full day dedicated to learning, connection, and support for everyone affected by MPNs. This is one of our biggest and most anticipated events of the year. Expect expert speakers, patient stories, practical sessions, and the chance to meet others who truly understand what it means to live with an MPN. It’s a day filled with knowledge, community, and hope. We’re still finalising the programme, but we wanted to give you plenty of time to mark your diaries. ✨ More details coming soon and trust us, you won’t want to miss this one. #MPNVoice #LivingWithMPNsDay #London2026 #MPNCommunity #RareButNotAlone

SAVE THE DATE - Northern “Living with MPNs Day” We’re thrilled to announce that we’re bringing our much‑loved Living with MPNs Day up north for 2026! 📍 York 📅 4 July 2026 🕘 A full day of connection, learning, and support If you’ve ever wished for a northern version of our London event… this is it. A whole day dedicated to people living with MPNs, their families, and anyone who wants to understand more about navigating life with these rare blood cancers. Expect expert speakers, patient stories, practical sessions, and plenty of opportunities to meet others who truly understand the journey but for now, we’re keeping the programme under wraps. ✨ More details are coming soon. But trust us, you’ll want this in your diary. Whilst we wait, please show your interest in a comment below... #MPNVoice #LivingWithMPNsDay #York2026 #MPNCommunity #RareButNotAlone

SAVE THE DATE - Irish “Living with MPNs Day” 🇮🇪 We’re delighted to share that our next Irish Living with MPNs Day will be taking place in Galway on 23 May 2026. A full day dedicated to learning, connection, and support for everyone affected by MPNs. If you’ve ever wished for a major MPN Voice event in Ireland, this is your moment. Expect expert speakers, patient stories, practical sessions, and plenty of opportunities to meet others who truly understand the journey. Think of it as the spirit of our London event… brought to the west coast of Ireland. We’re still finalising the programme, but we wanted to give you plenty of time to mark your diaries. ✨ More details coming soon but trust us, you’ll want to be there. #MPNVoice #LivingWithMPNsDay #Galway2026 #MPNCommunity #Ireland #RareButNotAlone

SAVE THE DATE - MPN Voice Oxford Patients’ Forum 2026 We’re very pleased to share that an MPN Voice in‑person Patients’ Forum will be taking place in Oxford on 17 March 2026, from 4pm to 8pm. These forums are one of the most meaningful parts of our year - a chance for patients, families, and clinicians to come together, learn, connect, and support one another. And we’re thrilled to be bringing this event to Oxford in 2026. We’re still finalising the programme, speakers, and registration details, but we wanted to give you plenty of time to mark your diaries. ✨ More information will follow soon so stay tuned. #myeloproliferativeneoplasm #polycythemiavera #essentialthrombocythemia #myelofibrosis #mpnvoice #bloodcancerawareness #rarecancer #chronicillness #chronicallyawesome #mpnsm