Tuesday 5 November 2024, 1 – 5 pm (arrival/registration from 1pm with complimentary buffet lunch) Venue Thackray Museum of Medicine 141 Beckett Street Leeds LS9 7LN THIS IS AN IN-PERSON FORUM NOT VIRTUAL/ONLINE You are welcome to attend this forum regardless of where you live or which hospital you attend, if you are willing to…
The MPN Voice Fundraising Team would like to say a huge THANK YOU to everyone who took part in fundraising events and made donations in 2023, and to all your amazing supporters for their generosity. There have been many inspirational fundraising events all with very moving stories behind the motivation to raise incredible funds for…
Hello everyone It’s that time of year again for the round-up of the MPN Voice year, and once again it has been an amazing and very busy year. Forums, in-person and virtual online – the in-person forum calendar was full this year, with 7 forums in Galway, Nottingham, Inverness, Llandudno, Newcastle-upon-Tyne, Leeds and Edinburgh, all…
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…
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…