MPN Voice, London (2026)

04/08/2026

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://linktr.ee/Mpnvoice or via our bio

04/08/2026

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!

04/08/2026

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://linktr.ee/Mpnvoice

04/08/2026

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 and .

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

04/08/2026

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 or via our bio: https://youtu.be/o8jP2YYNpxg

04/08/2026

Registration is Officially Open: MPN Voice Patients’ Forum – Nottingham 2026

Join patients, families, and leading clinicians for a dedicated in-person afternoon of connection, shared experiences, and the latest updates in MPN care. Whether you are newly diagnosed, a long-time patient, a family member, or a friend, this event is an absolute must-attend.

📌 Event Details
• 📅 Date: Tuesday, 18th August 2026
• ⏰ Time: 1:00 PM – 5:00 PM (Arrival/registration from 1:00 PM with a complimentary buffet lunch)
• 📍 Venue: Mercure Nottingham Sherwood Hotel, 296 Mansfield Road, Nottingham, NG5 2BT
• 🎟 Cost: Free to attend (Includes complimentary food, refreshments, and free on-site parking)

✨ Why You Can't Miss This:
• Expert Insights: Hear directly from the specialist haematology team at Nottingham City Hospital, including Dr. Fran Wadelin and MPN CNS Angela Thompson.
• Interactive Panel Q&A: Get your personal questions answered by specialists.
• Dedicated Breakout Groups: Join focused sessions tailored for ET, MF, and PV patients to swap everyday tips, plus a supportive, dedicated group specifically for partners, family, and friends.
• Community Connection: Meet fellow members of the MPN community in a warm, welcoming environment, regardless of where you live or which hospital you normally attend.

👉 Spaces are filling up so secure your free spot today:
👉Register here or via our bio [https://linktr.ee/Mpnvoice
Further details on our guest speakers and the full agenda will be shared very soon!

20/07/2026

They Did It! 630 Miles for MPN Voice! 🥾🐾

What a monumental achievement! A huge shout-out to Team Jasper. Andy, Richard, Kate, and their loyal bordoodle, Jasper for officially completing their epic 630-mile trek along the South West Coast Path.

They set out with one mission: to give back to MPN Voice for the invaluable support and information provided to them following Kate’s MPN diagnosis three years ago.

Despite the immense challenge of walking a half-marathon every day for 52 days and tackling gradients equivalent to climbing Mount Everest four times, they powered through to the finish line!

The Incredible Stats Behind Their Journey:
• Total Distance: 630 miles of rugged coastline walked, from Minehead to South Haven Point.
• Effort: Over 1.7 million steps taken and more than 115,000 feet climbed.
• Personal Toll: They burned over 280,000 calories and drove 4,500 miles to complete this mission.

A massive thank you to everyone who supported Team Jasper by following their updates on Facebook and Instagram, sending words of encouragement, or donating to the cause.

Every donation helps us do what we do so that these conditions can be better understood and, one day, cured.

While the walking is done, the JustGiving page remains open for anyone who still wishes to donate and support their phenomenal effort. Thank you, Team Jasper, for being an inspiration to us all! 💙

2026 Charity Walk

20/07/2026

Life with an MPN in your 20s or 30s? You weren’t built to navigate this alone. 🧠⚡

Let’s be real: explaining your diagnosis to friends who think "you look fine" is exhausting. Balancing career, family, fertility, and the "what-ifs" while living with a chronic blood cancer? That’s a unique pressure that most people your age simply don’t get.

But we do. And so does your new inner circle.

The MPN Young Patients’ Forum (40 & Under) is back, and seats are already vanishing. ⏳

This isn’t just another lecture. This is your access pass to the room where the real, unfiltered conversations happen whiche are led by the brilliant Prof. Claire Harrison and her team. We’re cutting through the noise to get to the topics that actually impact your life right now.

Why you cannot afford to skip this:
• The "Know-How" Gap: Get expert answers on fertility, pregnancy, career pivots, and long-term symptom management that you won't find on a standard search engine. 🔍

• The Power of Proximity: Connect with peers who are actually living your reality. No more feeling like the "only one" in the room. 🤝

• The Inside Track: You'll be among the first to hear about the latest research and trial breakthroughs directly from the experts pioneering them. 🔬

⚠️ WARNING: EXTREMELY LIMITED CAPACITY.

To keep the environment intimate, safe, and supportive, we’ve capped the registrations. Once the last seat is claimed, that’s it. You don’t want to be the one reading the highlights on social media the day after, wishing you’d acted sooner.

Are you in, or are you going to stay on the sidelines?

👉 Stop scrolling and secure your spot here before the list closes: https://linktr.ee/Mpnvoice

Event Details
🕰️ 1pm-5pm 5 Sept 26
📍 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.

Your future self will thank you for making this connection.

20/07/2026

A Journey of Resilience: Walking for MPN Voice 🥾

We are so proud to highlight the inspiring story of Anthony. After navigating his own journey over the past three years surviving prostate cancer and now facing a diagnosis of a rare blood cancer known as an MPN (myeloproliferative neoplasm), Anthony is choosing to turn his experience into action.

Anthony credits MPN Voice as a "great comfort" by providing trustworthy information, funding essential research, and offering access to a supportive community of others living with this rare diagnosis.

To give back, Anthony laced up his boots for another long-distance backpacking challenge along the South West Coast Path. Over three days, he was trekking across the rugged terrain, hoping for a little more kindness from the weather this year!

Thanks Anthony...

20/07/2026

A massive THANK YOU to our amazing Zip Wire heroes! 🧗‍♀️

We are so inspired by the incredible spirit of our community! The Ilkley Moor Cow and Calf Zip Wire challenge is no small feat braving the iconic “cow” rocks to launch down a 270m zip slide at speeds of up to 35 miles per hour takes real courage!

We want to send a special, heartfelt shout-out to Paula and her daughter, Katie. While Paula was originally set to take on the challenge, she unfortunately became unwell, but that didn't stop this team! In a wonderful act of support, Katie stepped in to ensure the challenge went ahead, showing true dedication to our cause.

We are so proud to share that Katie absolutely smashed it! Please join us in celebrating her success and thanking this brilliant duo for their support to vital MPN research.

Thank you, Paula and Katie, for everything you have done to help us move forward! 💙

MPN Voice

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