Join Us for the MPN Patients’ Forum in Cardiff! You are invited to our upcoming Patients’ Forum in Cardiff. Everyone affected by MPNs is welcome to attend, regardless of where you live or which hospital you visit. Family and friends are invited too! Event Details: * Date: Wednesday, 2nd December 2026 * Time: 4:00 PM – 8:00 PM * Venue: The Clayton Hotel, St Mary Street, Cardiff, CF10 1GD * Cost: Free (includes a complimentary buffet and refreshments) What to Expect: Our forums offer a great opportunity to connect with others living with Myeloproliferative Neoplasms (MPNs) and hear the latest updates on treatments, trials, and symptom management. The event features: * Expert Talks: Insights from Prof Steve Knapper (Cardiff University Hospital), Dr Ali Mahdi (Aneurin Bevan University Health Board), and specialist haematology nurses. * Patient Stories & Q&A: Real experiences shared by fellow patients, followed by a live Q&A session. * Small Breakout Groups: Dedicated spaces for each MPN type to swap tips and discuss daily challenges, plus a supportive group tailored specifically for family and friends. Travel & Parking: There is no parking on-site, but public car parks are situated close to the hotel. Directions are available on The Clayton Hotel Cardiff Website. How to Register: Attendance is free, but places are limited and advance booking is required. Click the link here to book your place now… linktr.ee/Mpnvoice #myeloproliferativeneoplasm #bloodcancerawarenessmonth #essentialthrombocythemia #polycythemiavera #myelofibrosis

Are you living with Polycythaemia Vera (PV)? Your experience matters. We are collaborating with other patient organisations on an important study to understand how PV and its treatment impact daily life. Researchers want to hear directly from adults (18+) with PV who have had at least one phlebotomy (venesection) in the past 12 months. What it involves: An online survey taking approximately 40 minutes. Participation: Fully voluntary, and all insights help shape better future support. 👉 Find out more and take part here or through our bio: patientadvocacyeu.limesurvey… #PolycythaemiaVera #MPNVoice #ChronicIllness #bloodcancer

In our latest vlogcast, Nona sits down with young patient Rosie to talk about her journey following an MPN diagnosis at age 28. Rosie shares her experiences with navigating the path to diagnosis , managing symptoms like extreme fatigue and brain fog, adjusting to life on "Active Monitoring" (Watch and Wait), and finding invaluable support through the MPN Voice community. It's an honest, reassuring conversation that highlights why no one has to face an MPN alone. 📺 Watch the full discussion follow the link - linktr.ee/Mpnvoice or visit the MPN Voice YouTube Channel

In our latest vlogcast, Nona sits down with young patient Rosie to talk about her journey following an MPN diagnosis at age 28. Rosie shares her experiences with navigating the path to diagnosis , managing symptoms like extreme fatigue and brain fog, adjusting to life on "Active Monitoring" (Watch and Wait), and finding invaluable support through the MPN Voice community. It's an honest, reassuring conversation that highlights why no one has to face an MPN alone. 📺 Watch the full discussion follow the link in via our bio above or visit the MPN Voice YouTube Channel #ChronicIllness #BloodCancerAwareness

⚠️ Important Update Regarding Our Website Messages We have recently discovered a glitch on our website that has resulted in messages sent via our online contact form not coming through to us. We sincerely apologise for this technical issue and are currently working to get it resolved. At this stage, we are unsure how long the form has been affected. If you have tried to contact us through the website recently and have not received a response, please reach out to us directly by emailing: 📧 [email protected] Thank you for your patience and understanding.

Navigating Artificial Intelligence as an MPN Patient 🩸 Artificial Intelligence tools like ChatGPT, Gemini, and search assistants are becoming popular starting points for health questions. While AI can offer quick explanations, using it safely requires an understanding of both its benefits and limitations when managing a rare condition like a Myeloproliferative Neoplasm. The Pros of AI: ⚬Simplifying Complex Terms: AI can translate dense clinical language, lab reports, or trial summaries into plain English. ⚬Pre-Appointment Prep: It can help you brainstorm tailored lists of questions to ask your haematologist or Clinical Nurse Specialist. ⚬24/7 Information Access: It provides instant summaries of general health concepts when you need a quick overview. The Cons of AI: ⚬Risk of Hallucinations: AI tools generate text based on patterns, not medical understanding, which means they can output incorrect or outdated medical "facts". ⚬Outdated Terminology: AI frequently uses older terms like "myeloproliferative disorder" rather than "neoplasm," missing critical nuances around WHO classifications and driver mutations like JAK2. ⚬Lack of Individual Context: AI cannot assess your personal blood counts, cardiovascular risk factors, or treatment history. Tips for Using AI Safely: 1.Never Self-Diagnose or Adjust Treatment: Always verify AI output with your haematology team before making health decisions. 2.Protect Your Privacy: Avoid entering full names, exact dates of birth, or sensitive personal identifiers into public AI prompts. 3.Cross-Check with Verified Sources: Use clinician-backed platforms like MPN Voice or HealthUnlocked to verify medical statements. AI is a helpful tool for research, but it can never replace the expertise and personal relationship you share with your healthcare team. 💬 Have you used AI tools to research your MPN symptoms or prepare for clinic appointments? What has your experience been like? Let us know in the comments! 👇 #MPNVoice #PolycythaemiaVera #EssentialThrombocythaemia #Myelofibrosis #HealthTech #AISafety #PatientEmpowerment #DigitalHealth #LivingWellWithMPN

Navigating Menopause, HRT, and MPNs 🩸 Navigating perimenopause or menopause alongside an MPN diagnosis can present unique questions, particularly regarding overlap in symptoms like fatigue, brain fog, or night sweats, and managing hormone replacement therapy (HRT) safely. In our YouTube webinar, released Jan 23, called - Menopause, HRT & MPNs, Nurse Consultant Debbie Holloway, Clinical Nurse Specialist Claire Woodley, and Professor Claire Harrison break down essential guidance on menopausal health, symptom management, and hormone therapy. Key Takeaways from the Webinar: ⚬Understanding the Transition: Perimenopause and menopause involve fluctuating estrogen levels. Symptoms can range from hot flashes and night sweats to mood shifts, joint stiffness, dry mouth, or dry eyes. ⚬Distinguishing MPN vs. Menopause Symptoms: Because night sweats, brain fog, and fatigue occur in both MPNs and menopause, tracking your cycle and symptom patterns helps your clinical team determine the underlying cause. ⚬Navigating HRT Safety: While HRT raises valid questions regarding cardiovascular and thrombosis risks, individual risk profiles vary. Transdermal HRT options (such as patches or gels) are frequently discussed as safer alternatives that minimize clotting risks when coordinated with your haematologist. ⚬Diet and Complementary Approaches: Simple lifestyle adjustments, such as managing room temperatures, maintaining a balanced diet, and discussing safe complementary approaches, play a supportive role in daily comfort. Open communication between your haematology specialist, GP, and gynaecology care team ensures your menopausal health is managed safely without compromising your MPN treatment. 💬 Have you discussed menopausal symptoms or HRT options with your healthcare team? What strategies have helped you manage this transition? Share your experience below! 👇 #BloodCancerAwarenessMonth #MPNVoice #WomensHealth #PolycythaemiaVera #EssentialThrombocythaemia #Myelofibrosis #Menopause #HRT #PatientSupport #LivingWellWithMPN

What would you do? The quietest battles in the corporate world are often fought by high-performing professionals sitting just two desks away or logging into the same morning video call. One day, they are navigating a standard fatigue or an routine check-up; the next, they are quietly trying to pronounce and process terms like myeloproliferative neoplasm, polycythemia vera, or myelofibrosis. Most business leaders and teams have never heard of an MPN. Yet, for the individuals managing these rare blood cancers, the diagnosis is permanently etched alongside a profound wave of shock, vulnerability, and professional uncertainty. As leaders, we pride ourselves on emotional intelligence, psychological safety, and fostering inclusive cultures. But how well do we actually support team members navigating invisible, chronic, or rare health battles? When a valued employee or colleague receives a life-altering diagnosis, their immediate world fractures. Their very first thoughts usually revolve around survival, stability, and fear of professional obsolescence: Will I be seen as a liability? Can I keep up with my targets? Do I tell my manager, or do I hide this to protect my career? This MPN Awareness Day, the challenge to leadership goes beyond standard HR policies or compliance check-boxes. It asks for a deeper human response. Consider your own team right now: How would you respond if a key performer called you today, shared a rare blood cancer diagnosis, and asked if they still have a future here? How do you act to create an environment where an employee feels safe disclosing a chronic illness without fearing it will capsize their trajectory? Maybe leadership isn't just about managing output during peak performance; it's about holding space when the ground gives out beneath your people. 👇 Reflect on this: If someone on your team received this news today, what is the first action you would take to support them? Share your perspective below. #MPNAwarenessDay #BloodCancerAwareness

Diagnosis Day! One day you’re navigating life, the next, you're learning to read your blood test results and trying to pronounce words like myeloproliferative neoplasm, polycythemia vera, essential thrombocythemia, or myelofibrosis. Today is MPN Awareness Day, and we need to break through the noise to make these rare blood cancers visible. The algorithm loves conversation, but humanity thrives on shared experience. When the doctor finally said the words "You have an MPN (or something similar)" what was the very first question that flashed through your mind? Was it about life expectancy? Was it "Can I still travel?" Or was it just a stunned silence trying to figure out what a bone marrow actually does? Drop your first question in the comments below. Let’s show newly diagnosed patients scrolling through this hashtag that they are completely, fiercely not alone. 👇 Share that first question below, maybe tag someone who has stood by you, and let’s get sharing. #MPNAwarenessDay #MPN #BloodCancerAwareness #Eessentialthrombocythemia #polycythemiavera #Myelofibrosis #RareDisease

10 September is MPN Awareness Day! 🔴 A whole day dedicated to coming together, raising our voices, sharing our stories, and supporting one another. We know that navigating life with a myeloproliferative neoplasm can sometimes feel isolating, but today is a powerful reminder that you are part of a global, compassionate community. Whether you are a patient, caregiver, loved one, or healthcare professional, your voice matters. Let us use this day to celebrate our resilience, focus on our well-being, and show the world the true strength of the MPN community. 💬 Let us share our collective wisdom: What is one essential piece of advice about self-care or managing your MPN that you would share with someone who is newly diagnosed? Drop your thoughts and encouragement in the comments below! 👇 Let us flood social media with messages of hope, connection, and support. Make sure to tag your posts with #MPNAwarenessDay2026 and #MPNVoice throughout the day! Looking for support or connection? Our Buddy Programme offers peer-to-peer connection, and our Young Patients Network provides targeted support for younger adults living with an MPN. Find all of our community resources on our website or via our link in bio: 👉 linktr.ee/Mpnvoice #MPNAwarenessDay2026 #MPNVoice #BloodCancerAwarenessMonth #PolycythemiaVera #EssentialThrombocythemia #Myelofibrosis #MPNSupport

How Digital Health is Changing MPN Care 🩸 Measuring symptoms accurately is essential for choosing the right treatments and tracking how well they work over time. During Blood Cancer Awareness Month, we are highlighting how patient-reported data and smart technology are helping shape the future of MPN care. In our presentation from the Galway Patient Forum, available on our YouTube, Dr Patrick Harrington shares key findings from the My MPN Voice App and Wearable Study. Key Highlights from the Study: ⚬Understanding Symptom Impact: Over 90% of MPN patients experience daily symptoms that affect their quality of life, work, and emotional well-being. ⚬Bridging the Data Gap: While most clinicians look out for symptoms, formal tracking tools like the MPN10 Total Symptom Score are still underused in routine clinic appointments. ⚬Real-World Evidence from 500+ Patients: Over 500 UK patients are actively using the app to log symptom scores and track biometric data, like daily steps and sleep quality, using smartwatches. ⚬Connecting Activity with Symptoms: For the first time, study data shows a direct inverse link between high fatigue levels and lower daily activity metrics, giving researchers objective evidence of how symptoms impact daily movement. Using digital tools helps bridge the gap between patient experience and clinical decision-making, giving you a clearer voice in your own care. 💬 How do you keep track of your symptoms between clinic appointments? Do you use an app, the MPN Voice app, a paper diary, or a wearable device? Share your tips in the comments below! 👇 #BloodCancerAwarenessMonth #mpnvoice #PolycythaemiaVera #EssentialThrombocythaemia #Myelofibrosis #HealthTech #DigitalHealth #PatientEmpowerment #LivingWellWithMPN

Blood Cancer Awareness Month: Managing Brain Fog, Fatigue and Daily Life mental resilience Brain fog and fatigue are among the most widespread, yet invisible, challenges of living with a Myeloproliferative Neoplasm. Over 90% of patients experience significant symptom burden that impacts work, social life, and emotional well-being. In our presentation, MPNs: Managing Fatigue, Brain Fog and Daily Life, Clinical Nurse Specialist Angela shares compassionate, practical strategies to help navigate daily life with an MPN. Key Takeaways: ⚬Blood Counts Do Not Tell the Whole Story: It is common for clinicians to say your blood numbers look stable, even when you feel exhausted. Tracking symptoms using tools like the MPN10 score helps ensure your daily experience is heard and validated. ⚬Reframe Rest and Avoid the "Boom and Bust" Cycle: Resting is not a sign of failure. On high-energy days, pace yourself rather than overdoing tasks, and break up activities into manageable steps. ⚬Navigating Brain Fog: Difficulty concentrating or remembering names can feel overwhelming. Using planners, phone alarms, short daily walks, and brain exercises like crosswords can help keep your mind active and organized. ⚬Workplace Support: Under the UK Equality Act 2010, employers are required to make reasonable adjustments. Your Clinical Nurse Specialist (CNS) may be able to provide support letters requesting short breaks or flexible working patterns. Finding ways to adapt your routine allows you to honour your body without feeling like you have to do it all at once. 💬 How do you manage fatigue or brain fog on tough days? Share your go-to tips and any unusual brain fog related stories in the comments below! 👇 #BloodCancerAwarenessMonth #MPNVoice #PolycythaemiaVera #EssentialThrombocythaemia #Myelofibrosis #MPNFatigue #BrainFog #PatientSupport #LivingWellWithMPN

Managing MPNs Through Nutrition 📷 September is Blood Cancer Awareness Month! While medical care is essential, finding practical ways to support your body can make a real difference in daily life. In our YouTube presentation, Optimising Nutrition in MPNs, specialist dietitian Laura explains how dietary choices can help manage symptoms and lower inflammation. Key Takeaways: ⚬ Managing Inflammation: MPN genetic mutations trigger internal inflammation. A Mediterranean-style diet filled with whole foods, healthy fats, and fewer processed meats can help lower this burden. ⚬ Preserving Muscle: Focus on body composition rather than just weight. Getting enough protein (like yogurt, nuts, seeds, or fish) supports muscle strength and energy. ⚬ Staying Hydrated: Dehydration is a surprisingly common cause of fatigue. Aiming for 30 to 35 ml of fluid per kg of body weight daily supports vascular health and energy. ⚬ Eating with a Reduced Appetite: If an enlarged spleen makes eating difficult, smaller, nutrient-dense snacks throughout the day can maintain your energy without causing discomfort. Taking control of diet is a great way to feel empowered alongside your treatment. 📷 What daily tips or dietary changes have helped you feel better while living with an MPN? Share your go-to advice in the comments below! 📷 #BloodCancerAwarenessMonth #MPNVoice #PolycythaemiaVera #EssentialThrombocythaemia #Myelofibrosis #MPNNutrition #LivingWellWithMPN

Did you know that the discoveries leading to new MPN treatments and a better understanding of these conditions are often fueled by the voices and participation of patients just like you? 🔬 How does a volunteer-run organization advocate on behalf of the MPN community? Through a multi-pronged approach! MPN Voice provides medically backed information through leaflets and newsletters, runs patient forums to share the latest research, and actively works to influence policy by linking with other patient groups. Your voice, when joined with others, becomes a powerful tool for change. Every step forward in MPN research brings us closer to more effective treatments and, hopefully, a cure. Your voice truly matters and helps shape the future of MPN care. 💬 What's one area of MPN research you're most hopeful about? Share your thoughts below! 👇 Want to learn more and get involved? Like, follow and keep an eye on our MPN Voice website to see how you can help drive progress. Together, we can make a difference! #MPNAwarenessDay #MPNVoice #MPNResearch #PatientAdvocacy #ClinicalTrials #FutureOfMPN #MedicalBreakthroughs

Do you ever feel a "tired" that no amount of sleep can fix? A deep, heavy exhaustion that makes even simple tasks feel impossible? 😩 This isn't just regular fatigue, it's a common, and often debilitating, symptom for many people living with Myeloproliferative Neoplasms (MPNs). In fact, it's reported by a large percentage of patients! What might be going on? MPN-related fatigue is complex. It's not just a sign of being lazy or depressed. It's often a direct result of the disease itself, where the overproduction of blood cells and inflammation put the body in a constant state of tiredness. It can also be caused by low hemoglobin levels (anemia), side effects from medication, or even an enlarged spleen. The exhaustion can affect every part of life, from your ability to work and socialize to your emotional well-being. Causes of Fatigue: The Disease Itself - The body is working overtime to produce blood cells and fight inflammation. Anemia - Too few red blood cells means less oxygen is being carried through the body. Medication Side Effects - Some treatments can contribute to feelings of tiredness. Take Action Against Fatigue While it's a huge challenge, there are ways to manage MPN fatigue. The first step is to be proactive and talk to your healthcare team. Pace Yourself: Plan your day to include rest periods and prioritize tasks when you have the most energy. Keep a Journal: Tracking your fatigue can help you and your doctor identify patterns and potential triggers. Stay Active: Gentle, regular exercise like walking can actually help increase your energy levels over time. Seek Support: Connect with others who understand what you're going through. You are not alone in this fight. Don't let fatigue define your life with an MPN. What's one thing you do to help manage your fatigue? Share your tip in the comments below to help a fellow patient! 👇 If you or someone you know is struggling with MPN-related fatigue, our website is a great place to start. You can find detailed information and connect with our community for support. #fatigue #chronicillness

🚨 EVENT UPDATE: Living with MPNs Day! The in-person places for our all-day Living with MPNs Day in London are now FULL! However, you don't have to miss out on this incredible day of learning and support. Registration is officially OPEN to join us live online! Whether you are tuning in from home, work, or anywhere else in the world, our virtual live stream gives you front-row access to the latest scientific updates, expert clinical advice, and inspiring patient stories. 📍 EVENT DETAILS ⚬🗓️ Date: Living with MPNs Day ⚬⏰ Timings: 9:00 AM – 4:00 PM (Registration & coffee from 8:30 AM) ⚬💻 Format: Online Live Stream (In-person venue at 1 Basinghall Avenue, London is now at full capacity) 💡 PROGRAMME HIGHLIGHTS & TEASER We have an exceptional lineup of sessions planned for the day, led by top haematology specialists and Clinical Nurse Specialists: ⚬🧬 The Latest in MPN Research: Expert updates covering recent scientific breakthroughs, emerging clinical trials, and new treatment options. ⚬🌿 Managing Daily Symptoms: Practical guidance on navigating fatigue, brain fog, and symptom burden to help you live well alongside your diagnosis. ⚬💬 Live Audience Q&A: A dedicated panel session where both virtual and in-person attendees can put their questions directly to the clinical team. ⚬🧡 Patient Perspectives: Heartfelt sessions featuring MPN patients sharing their personal journeys and coping strategies. (Please note: Small breakout groups are exclusive to in-person attendees and will not be live-streamed or recorded to protect attendee confidentiality). 🎟️ HOW TO REGISTER FOR THE FREE LIVE STREAM Virtual places are free, but advance registration is required to receive your unique viewing link. Main presentations will also be recorded and uploaded to our YouTube channel 1 to 2 weeks after the event. 👉 Click the link here to register for the live stream linktr.ee/Mpnvoice Are you joining us virtually this year? Let us know in the comments below! 👇 #MPNVoice #LivingWithMPNs #PolycythaemiaVera #EssentialThrombocythaemia #Myelofibrosis #BloodCancerAwareness #PatientEducation #VirtualEvent

REGISTRATION NOW OPEN: Leeds MPN Patient Forum! Mark your calendars! Registration is officially open for our next in-person gathering at a fantastic new venue: the Thackray Museum of Medicine in Leeds! If you are living with Polycythaemia Vera, Essential Thrombocythaemia, or Myelofibrosis, this free afternoon is designed to connect you with leading medical experts, actionable advice, and a supportive community of people who truly understand. 📍 WHERE & WHEN ⚬🗓️ Date: Wednesday 4th November 2026 ⚬⏰ Time: 1:00 PM – 5:00 PM (Registration & complimentary buffet lunch from 1:00 PM) ⚬📍 Venue: Thackray Museum of Medicine, 141 Beckett Street, Leeds, LS9 7LN ⚬⚠️ IN-PERSON EVENT ONLY (Not available online/virtually) 💡 WHAT TO EXPECT ⚬🩺 Multi-Center Expert Speakers: Talks from top haematology teams across Leeds Teaching Hospitals NHS Trust, Guy’s & St Thomas’ NHS Trust London, and York District Hospitals NHS Trust, alongside expert Clinical Nurse Specialists. ⚬🗣️ Patient Insights & Live Q&A: Hear real stories from fellow MPN patients and get your questions answered directly by the expert clinical panel. ⚬👥 Interactive Breakout Groups: Smaller, dedicated sessions for ET, PV, and MF to swap daily management tips, plus a dedicated group for family and friends to share support and advice. ⚬🥪 Enjoy a complimentary buffet lunch and refreshments on arrival! 🙋 WHO CAN ATTEND? Everyone in the MPN community is welcome! It does not matter where you live or which hospital manages your care. If you are willing to travel, we would love to see you. You are also very welcome to bring family members or friends along with you. 💰 Cost: Completely FREE to attend (advance booking required). 🎟️ Spaces fill up quickly, so don't delay! 👉 Click the link here to book your free place today! linktr.ee/Mpnvoice Will we see you in Leeds this November? Drop a comment or tag someone who should come with you! 👇 #MPNVoice #LeedsMPNForum #PolycythaemiaVera #EssentialThrombocythaemia #Myelofibrosis #BloodCancerAwareness #PatientSupport #ThackrayMuseum #YouAreNotAlone

Do you ever experience an itch that you just can't scratch, especially after a warm shower or bath? 😳 It could be more than just dry skin. This kind of persistent and sometimes debilitating itching, known as pruritus, is a very common symptom for many people living with Myeloproliferative Neoplasms (MPNs), particularly those with Polycythemia Vera (PV). Why Does This Happen? While researchers are still working to fully understand it, this itching is thought to be caused by the release of chemicals like histamine. It's an internal reaction, not a skin problem, which is why lotions and creams often don't help. There are many strategies and treatments that may help manage MPN-related itching. The first step is to talk to your healthcare team and let them know what you're experiencing. 💬 What's your go-to tip for managing an un-scratchable itch? Share your advice in the comments below! 👇 If you want to learn more about this and other MPN symptoms, or to find support from others who understand, head over to our website. #MPNVoice #Itchy #Pruritus #MPNCommunity #PolycythemiaVera #KnowTheSymptoms #aquagenicpruritus