MPN Voice

MPN Voice supports people with rare blood cancers called myeloproliferative neoplasms (MPNs). We offer information, give emotional support and fund research.

[MPN Voice @MPNVoice]

Ever wish you could talk to someone who actually gets what living with an MPN is like?

Living with a rare blood cancer like ET, PV, or MF can feel isolating but you don’t have to navigate it alone.

On Friday 9th October 2026, we are bringing the MPN community together in person for the Newcastle Patients' Forum!

Whether you were diagnosed yesterday or have been managing an MPN for years, this is your space to connect, learn, and feel supported.
📍 WHERE & WHEN
•🗓️ Date: Friday 9th October 2026
•⏰ Time: 1:00 PM – 5:00 PM (Arrival & Registration 1:00 – 1:30 PM)
•📍 Venue: The Royal Station Hotel, Neville Street, Newcastle-upon-Tyne, NE1 5DH
•⚠️ IN-PERSON EVENT ONLY (Not virtual/online)

💡 WHAT TO EXPECT
•🩺 Expert Medical Updates: Latest research & guidance from Dr Andrew McGregor (Consultant Haematologist, Newcastle-upon-Tyne Hospitals NHS FT) and the local clinical team.
•🗣️ Real Patient Stories: Hear firsthand experiences from others on their MPN journey.
•💬 Live Panel Q&A: Get your burning questions answered by the experts.
•👥 Small-Group Breakouts: Dedicated sessions for ET, PV, and MF patients to swap daily tips, as well as a special group for partners, family & friends!
•🥪 Free Buffet Lunch & Refreshments: Served upon arrival!

🙋 WHO CAN ATTEND?
Everyone is welcome! It doesn't matter where you live or which hospital you attend if you can travel to Newcastle, we’d love to see you. You are very welcome to bring a friend, partner, or family member with you.

💰 Cost: Completely FREE to attend (booking required).
🎟️ Places are limited and advance booking is required!
👉 Click here https://t.co/vCct6Wvl8U

Are you planning to join us in Newcastle?
Tag a friend or drop a line in the comments below! 👇
#MPNVoice #NewcastleMPNForum #PolycythaemiaVera #EssentialThrombocythaemia #Myelofibrosis #BloodCancerAwareness #PatientForumr #bloodcancerawareness

[MPN Voice @MPNVoice]

You don’t have to walk this path alone.
Living with or supporting someone with a myeloproliferative neoplasm (MPN) can sometimes feel isolating, but this September, we walk as one united community.
Whether you are walking 1K, 5k, 10k, 20k, or setting your own distance across the month, every single step connects us. It is not about how fast or how far you go; it is about stepping out together to raise vital awareness, fund life-changing research, and support one another.
📷 How to join our movement:
• Choose your pace and route: Walk in your local park, along the coast, or around your area solo, with friends, family, or four-legged companions.
• Get in touch: Email [email protected] to let us know you are taking part!
Let us show the world the strength of the MPN Voice community. Lace up your trainers, share your story using #MPNWalk2026, and let us walk to support together! 📷📷

[MPN Voice @MPNVoice]

REGISTRATION STILL OPEN: MPN In-Person Forum – Llandudno!

There are still a few spaces remaining for our upcoming in-person event! Whether you are a patient, family member, or friend, we would love for you to join us.

📍 Event Details
• Date: Friday 25th September 2026
• Time: 1:00 PM – 5:00 PM (Arrival and registration from 1:00 PM with a complimentary buffet lunch)
• Venue: The Imperial Hotel, Vaughan Street, The Promenade, Llandudno, LL30 1AP
• Format: In-person only (Not virtual/online)
• Cost: Free to attend (Complimentary buffet lunch and refreshments included)

Who Can Attend?
• Open to All: You are welcome to attend regardless of where you live or which hospital you receive care at if you are willing to travel, we are happy to see you!
• Bring Support: Family members and friends are warmly encouraged to come along with you.
🗓️ What’s on the Programme?
While the full programme is still being finalized, it will feature:
• Expert Talks: Presentations from haematology teams at The Glan Clwyd Hospital, the Countess of Chester Hospital, and The Clatterbridge Cancer Centre.
• Patient Perspectives: Insights and experiences shared by MPN patients.
• Q&A Session: An opportunity to ask questions and get answers.
• Breakout Groups:
• Specific MPN Groups: Meet others with the same MPN in smaller groups to discuss everyday challenges, share tips, and chat.
• Family & Friends Group: A dedicated space for your loved ones to connect, share experiences, and learn how to support you and themselves.

🎟️ How to Book
Pre-booking is required to secure your place at this event.
https://t.co/vCct6Wvl8U or via our bio

#MPNVoice #MPNCommunity #PatientsForum2026 #Llandudno #RareButNotAlone

[MPN Voice @MPNVoice]

REGISTRATION STILL OPEN: MPN In-Person Forum – Glasgow!

There are still a few spaces remaining for our upcoming in-person event! Whether you are a patient, family member, or friend, we would love for you to join us.

📍 Event Details
• Date: Wednesday 9th September 2026
• Time: 4:00 PM – 8:00 PM (Arrival and registration from 4:00 PM – 4:30 PM with a complimentary buffet and refreshments)
• Venue: voco Grand Central Hotel, 99 Gordon Street, Glasgow, G1 3SF
• Format: In-person only (Not virtual/online)
• Cost: Free to attend (Complimentary buffet and refreshments included)

🌟 Who Can Attend?
• Open to All: You are welcome to attend regardless of where you live or which hospital you receive care at if you are willing to travel, we are happy to see you!
• Bring Support: Family members and friends are warmly encouraged to come along with you.

🗓️ What’s on the Programme?
While the full programme is still being finalized, it will feature:
• Expert Talks: Presentations from Glasgow haematology teams.
• Patient Perspectives: Insights and experiences shared by MPN patients.
• Q&A Session: An opportunity to ask questions and get answers.
• Breakout Groups:
• Specific MPN Groups: Meet others with the same MPN in smaller groups to discuss everyday challenges, share tips, and chat.
• Family & Friends Group: A dedicated space for your loved ones to connect, share experiences, and learn how to support you and themselves.

🎟️ How to Book
Pre-booking is required to secure your place at this event.
https://t.co/vCct6WvSYs

[MPN Voice @MPNVoice]

UPDATE: Selected Events Now Fully Booked! ⚠️

Thank you so much for the incredible response to our upcoming schedule!

Please note that only the Young Persons Forum and the Nottingham Forum are now completely full and closed for registration.

(Please remember that other events on our calendar still have spaces available be sure to check individual listings for availability!)

Due to high demand, these two specific events filled up extremely fast, highlighting just how popular and valuable these gatherings are for our community.

💡 Secure Your Spot Early Next Time!
Because our forums book up so quickly, we strongly encourage you to:
• Act Fast: Keep a very close eye on our announcements so you can grab your tickets as soon as future dates are released.
• Stay Tuned: We are actively planning more events to meet high demand. Make sure to check back regularly or sign up for our updates so you don't miss out next time!

If you cannot attend - please cancel you space to open up the place for others...

Thank you for your incredible enthusiasm and support!

[MPN Voice @MPNVoice]

Walk to Support 2026 is HERE! 🔴

September is Blood Cancer Awareness Month, and we’re inviting the entire MPN community, friends, family, and supporters to lace up their trainers for the MPN Voice Walk to Support 2026!

Whether you walk 5k around your local park, take on a 10k or 20k challenge, or split your distance across the month, every single step makes a difference.

🗓️ When: Anytime in September (with a special push on MPN Awareness Day, Sept 10th)
📍 Where: Anywhere in the world it's your route, your rules!
🐕 Who: Walk solo, with family, friends, or your dog!

How to take part:
1️⃣ Email [email protected] to get your official MPN Voice T-shirt & fundraising pack.
2️⃣ Set up your fundraising page on JustGiving (link in bio).
3️⃣ Share your journey using #MPNWalk2026 and #MPNVoice.

Together, we walk to raise awareness, support each other, and fund vital research into myeloproliferative neoplasms.

#MPNVoice #BloodCancerAwareness #MPNAwareness #YourStepsMatter #myeloproliferativeneoplasm #polycythemiavera #myelofibrosis #essentialthrombocythemia

[MPN Voice @MPNVoice]

Are you ET Triple Negative? - New MPN Voice Vlog: Nona & Dr. Anna Godfrey 🧬

In this insightful vlogcast, Nona sits down with Dr. Anna Godfrey from Addenbrooke’s Hospital, Cambridge, to discuss crucial updates for patients diagnosed with Essential Thrombocythemia (ET) who are triple negative (no JAK2, CALR, or MPL mutations) or have rare genetic variants.

Key Topics Covered:
• Redefining Triple Negative ET: Understanding why clinicians are moving toward more descriptive terminology to better reflect individual diagnoses and lower risks of disease transformation.
• RaMPVar registry: A brand-new UK collaborative project aimed at gathering data on rare MPN genetic variants to improve diagnostic accuracy and care pathways.
• Patient Involvement: How the MPN community can help shape future priorities for the registry.

👉 Watch the full vlog and learn more here: https://t.co/9bkPpCJPcV

[MPN Voice @MPNVoice]

Missed the Northern MPN Patient Day in York and not following our YouTube channel?

Watch the highlights now! 🎥

We are thrilled to announce that the full recordings from our Northern MPN Patient Day are now available to watch online!

Whether you’re looking for the latest scientific breakthroughs or seeking comfort in shared patient experiences, this playlist is your comprehensive guide to living well with an MPN. We brought together some of the UK’s leading hematology experts to answer the questions that matter most to you.

What you’ll find in the series:
•Medical Insights: Essential updates on the latest clinical trials, EHA highlights, and new research into CALR and MPN VAF.
•Practical Wellbeing: Expert advice on optimising nutrition, managing fatigue, and finding the right care team to support you.
•Patient Perspectives: Powerful, honest stories from patients sharing their personal journeys through clinical trials and life with an MPN.
•Looking Ahead: A hopeful, forward-looking panel discussion on what the future holds for MPN treatments and care.

Start watching the full playlist via the link here: https://t.co/vCct6Wvl8U

This event was designed to empower our community with knowledge, connection, and support. We hope these sessions provide you with the information you need and the reassurance that you are not alone on this journey.

Which session are you most excited to watch first?
Let us know in the comments! 👇

#MPNVoice #MPN #PatientDay #BloodCancerSupport #LivingWithMPN #PatientEmpowerment

[MPN Voice @MPNVoice]

Interferon Shortage Update: Your Questions Answered!

Are you feeling anxious about the recent interferon supply challenges or navigating a switch in your medication? You aren't alone.

We know how much uncertainty this has caused, so Nona Baker sat down with Dr. Priya Sriskandarajah and Dr. Alesia Khan to get the answers you need.

They provide a clear update on what this situation means for the MPN community and, more importantly, share practical guidance on how to manage the transition smoothly.

In this essential discussion, you’ll find out about:
•The Latest Data: An update on the ongoing UK-wide study regarding interferon, including key insights from patients who have already navigated a switch.
•Managing Anxiety: Practical, expert-backed advice on where to access free counselling and support services for patients and their families.
•What’s Next: Exciting news about a major upcoming clinical trial (launching this autumn!) that is set to involve over 1,300 patients and could significantly advance our understanding of MPNs.
•Finding Positivity: A reassuring conversation on reframing your diagnosis, understanding reclassification, and focusing on the positive steps you can take for your health.

Knowledge is power, and hearing directly from the clinicians managing these updates can help ease those worries.

Watch the full update here: https://t.co/vCct6Wvl8U or via our bio

P.S. Remember to share this with anyone you know who might be affected as support is available, and you don’t have to go through this alone.

#YoungPatientNetwork #ChronicIllnessLife #EssentialThrombocythemia #Myelofibrosis #PolycythaemiaVera #MPNVoice #interferon

[MPN Voice @MPNVoice]

Northern MPN Patient Day Vlog!

We are excited to share a special vlogcast recorded at the Northern MPN Patient Day in York!

Nona Baker sat down with a fantastic panel of hematology experts—including consultants, a research dietician, and clinical nurse specialists—to discuss the latest in MPN care.

In this video, you’ll hear expert perspectives on:
🩸Clinical Trials: How national and international options are available closer to home than you might think.
🩸Expert Collaboration: How specialists across the UK work together in MDTs to ensure the best possible patient care.
🩸Navigating Diagnosis: Honest discussions about "watch and wait" vs. active surveillance, and the importance of support systems.
🩸Nutrition & Wellbeing: Practical tips on supporting your gut health and managing symptom burden.
🩸Future Breakthroughs: Exciting updates from EHA Stockholm, including new therapies, immunotherapies, and the role of AI in research!

Whether you are a patient, a carer, or just looking to understand more about the MPN landscape, this conversation offers a wealth of knowledge and hope.

Watch the full discussion here: https://t.co/vCct6Wvl8U

[MPN Voice @MPNVoice]

MPN Voice is live in York today.
Sharing updates, support, and community wherever you are, we’re here with you.

#bloodcancerawareness

[MPN Voice @MPNVoice]

Catch up on the MPN Voice Post-EHA Updates Forum

Did you miss our live virtual forum on June 29, 2026? We have great news, as the full recording is now available on the MPN Voice YouTube channel.

We were thrilled to be joined by Prof. Claire Harrison and a panel of leading UK MPN specialists to discuss the latest advancements in the diagnosis, management, and treatment of MPNs straight from the European Haematology Association (EHA) Congress.

Our experts provided deep dives into a wide range of critical research and clinical updates:
Beth Psaila: Calreticulin and other targeted therapies.
Patrick Harrington: Biometric data and cardiovascular risk.
Anna Godfrey: Updates specific to PV.
Andrew McGreggor: Results from the SENTRY trial of Selinexor in MF.
Fran Wadelin: Results from AJX-101 with the novel JAK inhibitor AJ1-11095 in MF.
Adam Mead: Development of G6B: a novel target for MPN.
Alice Watson: Experiences of attending EHA as a patient speaker.
Panel Q&A: An extensive session with all speakers plus Claire Woodley.

Watch the full session here: https://t.co/mFxYZnbN8h

We hope you find these updates insightful. Thank you to everyone who joined us live and contributed to the discussion.

#EssentialThrombocythemia #Myelofibrosis #BloodCancerAwareness #PolycythemiaVera #MPNVoice #EHA2026 #mpnsm

[MPN Voice @MPNVoice]

Your chance to ask Professor Claire Harrison a question

We’re gathering patient questions for a special pre‑recorded Q&A session at the Northern MPN Patient Day 2026 and we’d love to include yours.

Whether you’re living with ET, PV, MF, navigating symptoms, exploring new treatments, or wondering what the future may hold, this is a safe space to ask the things that matter most to you.

🗓 Deadline for submitting questions:
5pm on Wednesday 24 June 2026

📩 How to take part:
Email your question (plus your first name and diagnosis if you’d like to share them) to: [email protected]

Your question may be featured in the session “Having an MPN - What the Future May Hold” with Professor Claire Harrison, recorded especially for the Northern MPN Patient Day in York.

📍 Northern MPN Patient Day – York
Saturday 4 July 2026
Online and in‑person registration - 🔗 Secure your place: https://t.co/vCct6Wvl8U

🖼 The full details are on the image feel free to share it with anyone who may benefit.

[MPN Voice @MPNVoice]

Advancing the future of MPN care.

We are thrilled to be hearing from Alice, our MPN Voice Young Patient Network lead, live from the European Haematology Association (EHA) congress in Stockholm!
EHA is a powerhouse of progress, acting as a global network that collaborates with international medical societies to elevate haematology education across Europe.

This annual congress is where the world’s leading clinicians, researchers, and experts converge to discuss the latest breakthroughs in diagnosing, managing, and treating blood disorders.

Being part of these conversations ensures that the voices and needs of our community are at the heart of global innovation.

Make sure you register for our MPN Voice Virtual Forum to get the latest updates from the EHA 2026.
#EHA2026 #BloodCancerResearch #PatientAdvocacy #Stockholm #YoungPatientNetwork

[MPN Voice @MPNVoice]

REGISTRATION NOW OPEN: MPN Voice Virtual Forum!

Get the latest updates from the EHA 2026 Congress delivered directly to you.
We are thrilled to invite you to our upcoming virtual forum, featuring expert insights from Prof. Claire Harrison (Guy’s & St Thomas’ Hospital) and a panel of leading UK MPN Specialists.

This is your opportunity to hear about the latest advancements in the diagnosis, management, and treatment of MPNs discussed at the European Haematology Association (EHA) Congress.

🗓️ Event Details
•Format: Virtual/Online (Zoom)
•Registration: Essential; therefore, please register via the link below to receive your joining instructions.
•https://t.co/vCct6Wvl8U

💬 Live Panel Q&A
Have a question for our specialists? We are hosting a live Q&A session!
•Submit in advance: Use the registration form or email us at [email protected].
•Submit on the day: Use the 'chat' facility during the live session.

Note: To ensure a productive session, please focus your questions on general topics. Our medical team cannot provide specific advice on individual cases or review test results, so please continue to consult your own consultant or GP for personal medical guidance.

🎥 Can’t make it live?
Don’t worry! An on-demand video of the full event will be available after the forum on the MPN Voice YouTube channel.

We look forward to seeing you there!

#EssentialThrombocythemia #Myelofibrosis #BloodCancerAwareness #PolycythemiaVera

[MPN Voice @MPNVoice]

Just Diagnosed with an MPN? Take a Deep Breath.

Finding out you have a rare chronic blood cancer like #PolycythemiaVera (PV), #EssentialThrombocythemia (ET), or #Myelofibrosis (MF) is a massive shock. In a single afternoon, your vocabulary is forced to include complex medical terms, and it is completely normal to feel overwhelmed or isolated.

Before you go down the rabbit hole of Google, hold onto these vital facts:

⚖️ You can live a full, active life:
With modern medical management, targeted therapies, and routine care, many MPN patients have a normal or near-normal lifespan.

🛠️ This is a manageable journey:
Think of it as a long-term project. Your clinical team isn't treating a sudden crisis; they are working with you to balance cell production and protect your blood flow.

🚫 You didn't cause this:
MPNs are caused by acquired genetic changes (like JAK2, CALR, or MPL) that happen spontaneously over a lifetime.

Your Action Plan for the first few weeks:

1.Stop General Googling: Outdated stats or out-of-context articles on forum posts cause unnecessary stress. Stick to verified, patient-led spaces like MPN Voice.

2.Write Down Your Questions: Track your symptoms, energy patterns, and queries so you don't have to memorize everything for your next haematology appointment.

The Power of Connection:
The most powerful medicine is talking to someone who truly gets it. Our Buddy Programme matches you one-on-one with a volunteer patient who has the exact same diagnosis and has lived well with it for years.

🔗 Visit the MPN Voice website to learn more - https://t.co/2DO5xN1vOo

👇 If you've been living with an MPN, what is the ONE piece of advice you wish you’d been told in your first week? Drop it in the comments below to help someone newly diagnosed today!

#MPNVoice #NewlyDiagnosed #BloodCancerAwareness #ChronicIllnessWarrior #PatientSupport #YouAreNotAlone

[MPN Voice @MPNVoice]

📢 Registration Now Open: MPN Young Patients’ Forum (40 & Under)

Are you aged 40 or under and living with an MPN? We are delighted to invite you to our Young Patients’ Forum, a dedicated space designed specifically for you.

Building on the success of last year's inaugural event and our ongoing digital network, this forum is your opportunity to connect with others who truly understand your journey.

Event Details
•📍 Venue: R & D Department, 16th Floor, Guy’s Hospital, Great Maze Pond, London, SE1 9RT
•👥 Who: MPN patients aged 40 and under (you are welcome to bring one guest—partner, family member, or friend).
•☕ Refreshments: Complimentary coffee, tea, and light refreshments provided.

Why This Forum Matters
Living with a chronic illness at a younger age brings unique challenges. This forum provides a space to share stories, swap tips, and receive clinical information tailored specifically to your stage of life.

The programme will feature:
•Expert Insights: Presentations from specialist clinicians and nurses, led by Prof. Claire Harrison.
•Relevant Topics: Discussions on MPN symptoms, treatments and side effects, and lifestyle tips covering education, careers, family planning, fertility, and pregnancy.
•Support & Wellbeing: Guidance on managing the psychological impact of a chronic diagnosis.
•Patient Voices: Hear from other young patients sharing their personal paths to diagnosis.
•Connection: Participate in panel Q&As and breakout groups tailored by condition (ET, MF, PV) and a dedicated space for partners/family/friends.

Secure Your Place
Places are strictly limited to ensure an intimate and supportive environment. Please book your spot as soon as possible to avoid disappointment.

👉 Click Here (or in the IG bio) to Register for the Young Patients' Forum - https://t.co/vCct6Wvl8U

Don’t miss this chance to build your support network and gain valuable knowledge alongside your peers. We look forward to seeing you in London!
#mpnvoice #youngpatients #mpncommunity #myeloproliferativeneoplasm #chronicillness #youngandlivingwithMPN #bloodcancer #patientempowerment

[MPN Voice @MPNVoice]

MPN Voice Patients’ Forum – Nottingham 2026!

We are delighted to invite you to our upcoming in-person MPN Voice Patients’ Forum in Nottingham!

A dedicated space for patients, families, and clinicians to connect, share experiences, and learn about the latest developments in MPN care. Whether you are a patient, a family member, or a friend, we would love to see you there.

Event Details
•📅 Date: Tuesday, 18th August 2026
•⏰ Time: 1:00 PM – 5:00 PM
•📍 Location: Nottingham (Venue details to be confirmed)
•🎟 Cost: Free to attend (includes complimentary buffet lunch and refreshments)
•🚗 Parking: Free parking available at the venue

Why Attend?
This forum is open to everyone, regardless of where you live or which hospital you attend. It is a fantastic opportunity to:
•Hear from Experts: Learn from the specialist haematology team at Nottingham City Hospital, including Dr. Fran Wadelin and MPN CNS Angela Thompson.
•Connect with Others: Meet fellow members of the MPN community, share your journey, and support one another.
•Get Your Questions Answered: Participate in our panel Q&A session.
•Join Dedicated Breakout Groups: We will have specific sessions for ET, MF, and PV patients to swap tips, as well as a dedicated group for partners, family, and friends.

Registration Now Open!

We are currently finalizing the full programme, but you can secure your spot today. Don't miss out on this chance to gain insights and build connections in a supportive, welcoming environment.

👉Register here or via our bio [https://t.co/vCct6Wvl8U

Further details on our guest speakers and the full agenda will be shared very soon!
#myeloproliferativeneoplasm #polycythemiavera #essentialthrombocythemia #myelofibrosis #mpnvoice #bloodcancerawareness #rarecancer #chronicillness #chronicallyawesome #NottinghamEvents