MPN Voice, London (2026)

13/05/2026

Talking about your MPN doesn't have to be a struggle. 🗣️

It’s a scenario many of us at MPN Voice know well: you try to explain your diagnosis to a friend or family member, only to be met with a blank, confused look. Because MPNs are rare, those closest to us often don’t have a "frame of reference."

Excellent communication is the key to clearing the air and making sure unspoken fears don’t turn into shared anxieties. Here are a few techniques to help you bridge the gap:
1. Keep it Calm & Open 🧘
You communicate best when your voice is even and your body language is relaxed. Try to avoid being defensive and remember, they aren't experts yet! A smile goes a long way in making the other person feel comfortable enough to listen.

2. Translate the "Medical-Speak" 🩺
Terms like "platelets" or "JAK2" might be second nature to you now, but they can be baffling to others. Use simple language. Instead of "thrombosis risk," try "my blood is a bit too sticky."

3. Use Relatable Comparisons 🔄
Give them a baseline they understand. Compare MPN fatigue to the exhaustion of a heavy flu, or the skin itchiness to a severe case of chicken pox. It helps them "feel" what you’re describing.

4. Show the "Hidden" Side 🏠
People usually see you when you’re "up" like at work or out for dinner. They don’t see the days you need to stay in. Let them know your symptoms vary, and that just because you look well today doesn't mean the condition has gone away.

5. Set Clear Boundaries & Flexibility 🗓️
Be honest about your needs. Let loved ones know you may need to rest suddenly or cancel plans at the last minute. Explain that your schedule revolves around hospital appointments and "pacing" your energy.

6. Invite Curiosity 🙋‍♂️
Let them know it’s okay to ask questions! If you don't have the answer, point them toward the MPN Voice website or our leaflets.

Need a safe space to practice?
Our online forum on HealthUnlocked or our Buddy Programme are great places to connect with people who already speak the language.

How do you explain your MPN to others? Share your "go-to" analogy in the comments! 👇

12/05/2026

The power of "Support" 🧡

Living with an can be a lonely experience. Whether you are newly diagnosed or navigating a change in your condition, it’s normal to feel a mix of confusion, isolation, or fear. While friends and family are vital, they might be just as overwhelmed as you are.

Sometimes, the best person to talk to is someone who has already walked the path you’re on.

What is the MPN Voice Buddy Programme?
Our peer support initiative connects you with a "Buddy" who is a fellow patient who understands the emotional side effects of a chronic illness. They don’t just provide information; they provide empathy.
How it works:
✅ One-to-One Connection: Be matched with a supporter who has a similar diagnosis.
✅ Flexible Support: Chat via email or phone or whatever feels most comfortable for you.
✅ Real Understanding: Ask the questions you might feel "silly" asking a doctor, and talk through the daily realities of living with an MPN.

Why peer support matters:
This isn't just about clinical facts; it's about the "emotional logistics" of a diagnosis. A Buddy can help you navigate the "invisible" hurdles of fatigue, anxiety, and the mental load of a rare blood cancer. The relationship is a two-way street that fosters strength for both the supporter and the recipient.

How to get involved:
Whether you are looking for a Buddy to help you through a tough week or you’ve reached a place in your journey where you feel ready to support others as a volunteer, we want to hear from you.

🔗 Find out more and sign up here: https://www.mpnvoice.org.uk/get-involved/buddy-programme/ Or via our bio link

Have you been helped by a Buddy, or are you currently a volunteer? We would love to hear your stories in the comments. Let's show the community that no one has to face this alone. 👇

11/05/2026

WE WANT TO HEAR FROM YOU! | Follow-Up Q&A Session

Did you catch our latest vlog on the Global Interferon Shortage? The insights from the 520+ patients who shared their experiences have been invaluable, but we know you might still have questions about what this means for your personal treatment journey.

We are heading back into the studio at the end of May! 🎙️
Nona Baker will be sitting down again with our panel of experts: Dr. Alicia Kahn, Llewellyn Cadman-Davies, and Dr. Priya Sriskandarajah to ask the questions that matter most to you.

What’s on your mind?
• Are you concerned about the transition back to Pegasus?
• Do you have questions about the clinical differences between formulations?
• Want more details on those "speeding train" new drug trials and vaccines?
• Are you curious about how the survey data is being used to talk to NHS England?
Whatever it is, no question is too small.

How to Submit Your Questions:
📩 Email: [email protected]
📌 Subject Line: "Global Interferon Shortage Question"
🗓️ Deadline: Friday, 15th May 2026

Don’t miss out! If you haven't watched the original vlog yet, catch up now via the link in our bio or at https://linktr.ee/Mpnvoice.

Your voice helped us understand the shortage so now let us help you understand the path forward. 🔴⚪

11/05/2026

Full blood count reports can be confusing.

People with are sometimes baffled by the numbers they see on their full blood count (FBC or CBC). Haematologists use them to keep track of your condition and to make treatment decisions. They can show whether treatment is working and how the disease is evolving.

The full blood count report shows the number of red blood cells, white blood cells and platelets in the blood, and about the size and shape of these cells. The report also shows the normal range of blood cells a healthy person has for comparison.

Terms:
Your Haemoglobin (HB) level shows whether you are anaemic or polycythaemic, in other words whether you have too few or too much haemoglobin.

Packed cell volume (PCV) and haematocrit (HCT) mean the same thing – they are a measure of your blood thickness. Haematologists refer to your PCV rather than your haemoglobin level to make treatment decisions.

Your mean corpuscular volume (MCV) indicates the size of your red blood cells. This often goes down with iron deficiency and up with Hydroxycarbamide treatment in MPN patients.

White cells are the “soldiers” of the blood; they help to fight infections. If your white cell differential is low you may be at risk of infection. White cells may be high in all MPNs and are increasingly thought to be associated with a risk of thrombosis.

White cell differential: This shows the number of different white cells in your blood.

Neutrophils are a type of white blood cell that help to fight bacterial infections. Your neutrophil count will usually go up when you have an infection and go back to normal when the infection has resolved. Some treatments used for MPN can lower the neutrophil count and may increase the chance of getting an infection.

Platelets - When you have an injury, platelets work together with clotting factors to form a blood clot. The platelets become “activated” – they change to a spiked form, which allows them to stick to other activated platelets and clotting factors at the point of injury, forming a mesh or clot.

Do you understand your bloods?

10/05/2026

To the young MPN warriors: We see you. 🧡💙

One of the hardest parts of being diagnosed with an MPN in your teens, 20s or 30s is feeling like you’re the "only one" in the waiting room.

The questions you have are different. You aren't just thinking about counts; you're thinking about:
✅ Building a career with fatigue.
✅ Starting a family and pregnancy safety.
✅ Staying active and keeping your social life.
✅ The mental toll of a lifelong diagnosis.

The MPN Voice Young Patients Network was built specifically for you. We are a global community of younger patients supporting each other through the unique hurdles of living "young with an MPN."

🚀 THE BIG ANNOUNCEMENT:
Our next Young Patients Forum is happening in London!
📍 Where: London (Save the date!)
📅 When: Saturday, 5th Sept 2026
⏰ Time: 1:30 PM – 6:00 PM

This isn't just a medical talk, it’s a chance to meet people who actually get it. No explanation needed.

Check out our Young Patient Leaflet and, when registration opens, grab your spot for the London Forum before it fills up.

Young Patient Leaflet - via https://linktr.ee/Mpnvoice

Tag a friend below who needs to know they aren't alone in this! 👇

10/05/2026

Huge Congratulations to Dani!

Today, Dani completed the AJ Bell Great Bristol Run 2026 Half Marathon all in support of MPN Voice, a charity that means the world to him and his family.

His mum was diagnosed with an MPN 20 years ago, and throughout her journey, MPN Voice has been a steady source of support. From trusted medical information to patient forums and vital research funding, the charity has helped families like his navigate life with a rare blood cancer.

MPNs (Myeloproliferative Neoplasms) are rare, chronic, and currently incurable blood disorders that affect how blood cells are produced in the bone marrow. They can cause symptoms like fatigue, night sweats, blood clots, and complications that impact daily life. While treatments can help manage symptoms, more research is urgently needed. That’s why today mattered.

Dani set out to raise £500 to help MPN Voice continue its life‑changing work and every mile he ran was for his mum, and for everyone living with an MPN. Oh and he smashed his target...

💙 We’re incredibly proud of you, Dani.
Your determination, heart, and commitment to the MPN community shine through every step you took today.

And to everyone who has supported him, thank you. Together, we’re helping move closer to better treatments and, one day, a cure.

10/05/2026

When your child is diagnosed, your whole world shifts.

We talk a lot about the patient journey, but today we want to talk to the ones standing right beside them. The parents and carers.

Whether your child was diagnosed as a toddler, a teen, or a young adult, we know the weight you carry. It’s the late-night research, the balancing act of hospital appointments, and the quiet worry about their future, their education, their career, and their dreams.

At MPN Voice, we recognize that you are the primary advocate, the emotional anchor, and often, the one navigating complex financial and travel burdens to ensure they get the best care. You are not alone in this navigation.

Our Young Patient Network isn't just for the patients; it’s a space to help families understand the unique challenges of being "young with an MPN":
- Education & Career: Guidance on navigating school or workplace accommodations. - Family Planning: Resources for when they start thinking about their own future families.
- Emotional Support: A community that understands the specific anxiety of a rare diagnosis at a young age.
- The Strategy: You don't have to have all the answers today. You just have to be there and we are here for you.

Are you a parent or carer for a young MPN patient? Reach out, join our Network or maybe our Buddy Program can connect you with others who have walked this path.
Links are here - https://linktr.ee/Mpnvoice

👇 Drop a "💙" in the comments to let other parents and carers know they aren't alone.

09/05/2026

What is Myelofibrosis (MF)? 🩸
Myelofibrosis is a rare, blood cancer that disrupts your body's normal production of blood cells. It causes extensive scarring (fibrosis) in the bone marrow, the "factory" where your blood is made. As the marrow scars over, it can no longer produce enough healthy red cells, white cells, or platelets.

How it Develops:
• Primary MF: Develops on its own without a prior condition.
• Secondary MF: Develops after a patient has already lived with Essential Thrombocythaemia (ET) or Polycythaemia Vera (PV).
• The Switch: Like other MPNs, it is often driven by a mutation in the JAK2, CALR, or MPL genes. It is acquired during your lifetime and is not inherited.

Symptoms (but not all):
While some have no symptoms early on, most will experience:
⚠️ Severe Fatigue: Often caused by anaemia (low red blood cells).
⚠️ Splenomegaly: An enlarged spleen that causes a "full" feeling or pain under the left ribs.
⚠️ Night Sweats & Fever: Signs of the body’s inflammatory response.
⚠️ Bone Pain: A result of the changes occurring within the marrow.
⚠️ Easy Bruising: Due to low or poorly functioning platelets.

Diagnosis:
Haematologists look at more than just a blood count. They often use Abdominal Ultrasounds to measure the spleen and a Bone Marrow Biopsy to look for the level of "fibrosis" (scarring) and immature "blast" cells.

Treatment:
1. JAK Inhibitors: Medications like Ruxolitinib or Momelotinib help shrink the spleen and improve quality of life.
2. Managing Anaemia: Through blood transfusions, hormone shots (EpO), or specific tablets (Danazol).
3. The Potential Cure: A Bone Marrow Transplant (Stem Cell Transplant) is currently the only way to cure MF, though it carries significant risks that must be discussed with your specialist.

Prognosis & Outlook:
MF is a complex journey, and the outlook varies greatly between individuals. Some patients remain stable for over 15 years, while others require more intensive intervention quickly.

You are more than a diagnosis. Whether you are managing symptoms or considering a transplant, the MPN Voice community is here to support you and your family every step of the way.

08/05/2026

What is Essential Thrombocythaemia (ET)? 🩸
ET is a rare blood cancer that causes your bone marrow to produce too many platelets. While platelets are vital for clotting, having too many can make your blood "sticky," increasing the risk of clots. Paradoxically, because these platelets don't always function correctly, ET can also lead to bleeding issues.

The Facts:
• It affects primarily adults over 60, but it is increasingly diagnosed in younger people, especially women under 40.
• Not Inherited: It is an acquired genetic change, not something passed from a parent.
• The Variants: Most patients have a mutation in the JAK2 (~50-60%), CALR (~30%), or MPL (~5-10%) genes. These act as the "instruction manual" for cell growth.

Common (but not all) Symptoms (Many feel completely well):
🔹 Fatigue
🔹 Persistent headaches or dizzines
🔹 Coldness, tingling, or burning pain in hands and feet
🔹 Easy bruising or nosebleeds
🔹 Vision disturbances (silent migraines)
🔹 Redness or swelling in extremities

Diagnosis & Risk:
If a routine blood test shows a high platelet count, a Haematologist will rule out other causes like infection or iron deficiency. They will then assess your "Risk Level" based on your age, white cell count, and history of clots to build your personalized plan.

Treatment: The Balancing Act
The goal is to reduce complications while keeping side effects low.
1. Watchful Waiting: For low-risk patients, regular check-ups and low-dose Aspirin may be all that’s needed.
2. Cytoreduction: Medications like Hydroxycarbamide, Interferon, or Anagrelide to lower platelet production.
3. Lifestyle: Managing blood pressure, cholesterol, and stopping smoking are the most powerful tools you have to protect your long-term health.

Prognosis:
With proper management, most people with ET live a normal or near-normal lifespan.

The key is staying informed and connected with your clinical team.
Need a "Buddy" to talk to? If you’ve just been diagnosed with ET, our Buddy Program can connect you with someone who has been where you are. Visit the link in our bio to learn more. 🧡💙

07/05/2026

What is Polycythaemia Vera (PV)? 🩸
PV is a rare, slow-growing blood cancer where your bone marrow produces too many red blood cells. Think of it like a traffic jam in your veins where the extra cells thicken the blood, making it harder to flow and increasing the risk of clots.

The "Why" Behind the Diagnosis:
Nearly 97% of people with PV have a mutation in the JAK2 gene. This gene acts like an "On/Off" switch for blood production; when it’s faulty, the switch is stuck "ON," causing uncontrolled cell growth.

Key Facts for the Logical Mind:
• Not Inherited: You didn't catch it, and you can’t pass it to your kids. It’s an acquired change in DNA.
• Demographics: It’s more common in men and typically affects older adults.
• The "Rubra" Factor: You might hear it called Polycythaemia Rubra Vera—"Rubra" is Latin for red, referring to the flushed complexion some patients develop.

Common (but not all) Symptoms to Watch:
🔴 Red or flushed skin (especially the face)
😴 Fatigue and dizzy spells
🚿 Intense itching (Pruritus), often after a warm bath or shower
🧠 Headaches or blurred vision
🔥 Burning pain in hands or feet
🤢 Feeling "full" or bloated (due to an enlarged spleen)

Taking Control: Diagnosis & Treatment
If your red cell count is high, you’ll see a Haematologist. They use tests like Full Blood Counts, JAK2 screening, and sometimes an abdominal ultrasound to check your spleen.
The goal of treatment is simple: Reduce the "thickness" and prevent clots.
1. Venesection: Removing blood (similar to donating blood) to lower red cell counts.
2. Medication: Drugs like Hydroxycarbamide or Interferon to slow cell production.
3. Daily Management: Low-dose Aspirin to reduce stickiness and risk of clots.

Living Well with PV:
With modern care, many people live a normal or near-normal lifespan. The secret is management so keep your appointments, track your symptoms (maybe on the MPN Voice App), and manage lifestyle risks like blood pressure and smoking.

Are you newly diagnosed? Visit our new website for a deep dive into PV management and connect with our Buddy Program. You aren't in this alone. 🧡💙

06/05/2026

Meet the Medical Director: Professor Claire Harrison

Professor Claire Harrison is one of the world’s leading experts in myeloproliferative neoplasms (MPNs) and the driving force behind MPN Voice.

A graduate of Oxford University Medical School, Claire became a consultant at Guy’s and St Thomas’ Hospital in 2001, where she now serves as Deputy Chief Medical Officer. Her clinical focus is MPNs, and her work has shaped the global landscape of treatment and research.

Claire’s leadership in clinical trials and translational research has contributed to the approval of several groundbreaking therapies, including ruxolitinib, fedratinib, momelotinib, and pacritinib. Over the past decade, she has published more than 300 academic papers, earning national and international recognition for her contribution to the field.

But Claire’s impact extends far beyond the clinic. She founded MPN Voice (MPD Support as it was) alongside a group of volunteer patients who shared her vision to ensure that everyone living with an MPN has access to accurate information, compassionate support, and a strong community.

Outside of her professional achievements, Claire is a proud mum to Henry and Edward, and she’s passionate about food, family walks, and time spent outdoors. Her warmth and energy reflect the same values that drive MPN Voice connection, care, and community.

Her work continues to inspire both patients and professionals, reminding us that progress in medicine is most powerful when it’s rooted in partnership.

MPN Voice

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