The 7th Living with MPNs Day, hosted by MPN Voice, was an all-day event held in London, for MPN patients, their family and friends to hear the latest news on trials and treatments from leading experts in the field of MPNs, from the UK, Europe and the USA, specialist haematology nurses and MPN patients. This was…
In Conversation With … Gabor Posta, who talks to Nona about being diagnosed with ET when he was aged 17, and then with PV about 5 years later and how this had an impact on him as he was so young, particularly with regards to his career choice. Gabor tells Nona that he takes Aspirin…
An extra vlocgast this month with Nona and Orlando talking about the MyMPNVoice App which has been developed in partnership with Sanius Health. The My MPN Voice App is designed to allow people living with MPNs to be able to capture their quality of life (QoL) data on a daily, weekly or monthly basis, to…
As a young person living with an MPN I hope that my story will provide comfort to other young people with MPNs to know that they are not alone and there is support out there for them. MPN Voice is very close to my heart as I was diagnosed with Essential Thrombocythemia in September…
“My Mum is my inspiration. I feel helpless watching her struggle with her condition and realised fundraising was my way of supporting the vital research required to find potential cures for her and others like her”. My name is Heidi Rose. I am 31 years old and so far I have raised more than £6,000…
“My wife’s illness inspired me to become a fundraiser myself, it is not something I have ever done before, but I would definitely do it again.” My wife Annette was diagnosed with Polycythaemia Vera, more than fifteen years ago so I was keen to support the charity and the work they do to make…
In Conversation With … Paul Goode, who talks to Nona about his PV and how it was diagnosed in March 2020. Paul tells Nona that in 2019 he was experiencing itchy skin, he searched the internet for some answers and made some changes to products he was using, but nothing helped. He then received an…
The video of the MPN Voice patients’ virtual forum, held on Thursday 19 October 2023, is now available to view. This online forum focussing on Young People and MPNs features talks from: Prof Claire Harrison, Guy’s & St Thomas’ NHS FT; Dr Anna Godfrey, Cambridge University Hospitals NHS FT; Dr Jonathan Lambert, University College London…
We are delighted to announce that NICE (the National Institute for Health and Care Excellence) has recently released Final Guidance recommending Ruxolitinib for treating Polycythaemia Vera (PV) in adults in England who cannot tolerate Hydroxycarbamide (also called Hydroxyurea) or when the condition is resistant to it. Ruxolitinib is already approved, in similar cases, for the treatment of PV patients in Scotland and…
Researchers at the University of Oxford are working on a project that could make huge improvements to the diagnosis of myeloproliferative neoplasms (MPNs). Using AI, the research could lead to people getting an accurate diagnosis sooner and could mean that changes in bone marrow are picked up earlier, hopefully this will mean earlier access to…