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

Helen Bass

17 March 2016 “Hello, my name is Helen Bass and I live in Hertford with my partner. Having played tennis…

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Trevor Buckley

15 March 2016 “After my fiancé Lauren was diagnosed with Essential Thrombocythaemia in January 2014 at the age of 28,…

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James White

15 March 2016 “Hello, my name is James and I live in Winchester with my beautiful wife Sarah, who is…

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Samuel Beevor

15 March 2016 The 2015 Virgin London Marathon weekend was poignant for me, I spent most of the weekend reading…

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Sheena Hawkin

09 November 2015   Since Sheena was diagnosed with myelofibrosis (MF), her family and friends are throwing themselves into fundraising…

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Amanda Lythe

09 November 2015   Amanda, 33 and a mother of three children was diagnosed with ET in 2010 and is…

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Real Stories

Alisia

My name is Alisia. I’m 54 years old, and I’m a wife and mother of two beautiful girls.  I was diagnosed in 2008 with essential thrombocythaemia. Emotions of diagnosis Apart…

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Dick M

I’m a 70 year old retired agriculture/environment lecturer, living happily in north east Scotland. Having apparently been very healthy for many years, around my 69th birthday in 2013, I began…

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Anthony S

I was diagnosed with ET in August 2000, aged 30. My only symptom at that time was priapism; (wikipedia.org/wiki/Priapism) originally lasting an hour or so and occurring three months apart…

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Jeffrey W

My name is Jeffrey and I was diagnosed with Primary Polycythaemia several years ago. (I can’t actually remember how many) having been called back to my doctor following blood tests…

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Eric A

In June 2011 the haematology consultant at a London hospital suspected a myeloproliferative disorder because my platelet count had shot up from its normal range to 937 and he asked…

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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

Sep62021
AdvocacyGet InvolvedNewsWebinars

AOP Orphan MPN Awareness Day – Virtual MPN Breakfast Thursday 9th September

Advocacy, Get Involved, News, Webinars

Thursday 9th September 10 – 11.30 am (CET) Dedicated to MPN Awareness Day, AOP Orphan will host a virtual MPN Breakfast.  We warmly invite you to join this live discussion with patients, haemato-oncologists and researchers to raise awareness together! The speakers are: Mr. Thomas Bierfeld, MPN Patient Mrs. Sonja Kato, Moderator Mr. Peter Loffelhardt, MPN…

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