About MPN Voice

MPN Voice’s mission is to provide clear and accurate information and emotional support to everyone who has been diagnosed with a myeloproliferative neoplasm (MPN) and their families/friends.

MPN Voice has members across the UK and in many other countries throughout the world. We offer this website, patients’ forums around the UK during the year, and a Peer Support programme to allow people with MPNs to contact others in similar circumstances. We also have an online forum at HealthUnlocked which is a supportive and informative online forum where you can ask questions about anything related to MPNs, and get replies from people who really understand you - people living with a MPN. In addition we produce information leaflets and a newsletter for people with MPNs so that patients are better informed and have more confidence dealing with the management of their condition. MPN Voice also raises money to fund research towards a cure and advocacy for patients. Most of all we aim to offer hope to everyone who has a myeloproliferative neoplasm.

Our vision and desire is that one day there will be a cure and an answer to what causes MPN. Please join MPN Voice or email us at info@mpnvoice.org.uk to learn more.

Fundraisers

Jonathon Burkin

I’m Jonathan and my daughter Francesca has an MPN. I’d never heard of it until her diagnosis and hearing the…

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Jamie White

My name is Jamie White and I ran the London marathon to fundraise for MPN Voice. Why did you decide…

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Andrew Livingstone

  My name is Andrew Livingstone, I was diagnosed with ET after a rollercoaster journey of mostly negative emotions, uncertainty…

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Heidi Rose Gorringe

“My Mum is my inspiration. I feel helpless watching her struggle with her condition and realised fundraising was my way…

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Steve Wilson

  “My wife’s illness inspired me to become a fundraiser myself, it is not something I have ever done before,…

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Real Stories

VivL

VivL aged 69 Despite months of severe headaches which I went to my GP about, nothing was done until I had a transient ischaemic attack accompanied with numbness and tingling …

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Uschi K-R

Uschi K-R aged 69 I was born in Germany but have been living in the UK for the last 45 years, where I raised my family and worked as a…

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Suzie W

Suzie W, 46 years old. I was diagnosed with ET in 2012 while serving in the RAF.  Although my platelets remain at around 1200, I am lucky to be classed…

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Steven S

Steven S Aged 76 Managing my MPN against a plethora of medical issues I was diagnosed with ET about 30 years ago. This progressed to PV about eight years ago.…

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Melanie C

Melanie C aged  55. In March 2020 I had difficulty breathing and was admitted twice to hospital within four days. This was likely the result of a deep vein thrombosis,…

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Mark R

Mark R – aged 50  Using the bucket of energy wisely.  I was diagnosed with polycythaemia rubra vera in 1999, which progressed to myelofibrosis in 2019. This was confirmed by…

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I am....

I am feeling confused

The language of haematologists is complex. Knowing the lingo can help you find your way in the strange land of myeloproliferative neoplasms (MPNs). When you first learn you have a…

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I am feeling fatigued

As patients with myeloproliferative neoplasms (MPNs), there’s one thing many of us have in common: we may feel fatigued.  But there are solutions available that can give us more energy.…

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I am feeling strong

Some people with myeloproliferative neoplasms (MPNs) feel just fine. If you feel strong, take advantage of this and protect your long-term health by getting active. Not everyone with an MPN…

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I am pregnant

A coordinated care plan between your haematologist and your obstetrician helps ensure the health of you and your unborn child. Some people are diagnosed with a myeloproliferative neoplasm (MPN) in…

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I am looking to talk

One of the biggest challenges some people face when they have a myeloproliferative neoplasm (MPN) is finding someone to talk with, someone who really understands. Many of us didn’t know…

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I am feeling uncertain

Myeloproliferative neoplasms (MPNs) are chronic, long-term illnesses, and because they continue through our lives, they can change the way we see ourselves. While many people take their illness in their…

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Latest News

Sep242024
EventsGet InvolvedNewsPatients Forum

MPN Voice ‘virtual’ forum Wed 16 Oct 2024 – focus on myelofibrosis (MF)

Events, Get Involved, News, Patients Forum

STREAMING LIVE ONLINE – Wednesday 16 October 2024, 4:30 – 6 pm (16:30 – 18:00 hrs) (BST) REGISTRATION NOW OPEN! This MPN Voice ‘virtual’ forum will focus on myelofibrosis (MF).  The talks will be presented by: Dr Andrew McGregor, Consultant Haematologist, Newcastle-upon-Tyne NHS FT, Dr Donal McLornan, Consultant Haematologist, UCLH, London and Dr Alesia Kahn,…

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