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…
In this interview Dr Patrick Harrington, Consultant Haematologist, Guy’s & St Thomas’ Hospital, talks to Nona about Covid vaccines for MPN patients, he starts off by describing the research he carried out at the start of the Covid pandemic, with Covid being a new condition it was an area that needed a lot of research,…
In Conversation With … Dr Claire Andrews, Consultant Haematologist, St Vincent’s Hospital, Dublin, who spoke to Nona about her role as haematologist in St Vincent’s, taking up the post 2 years ago. She told Nona that there is a large cohort of MPN patients in the hospital, with many different needs. Claire then spoke about…
We recently invited you to submit a wide variety of quotes about how you have been affected by all or some of the documented 10 symptoms associated with MPNs, for an exciting non-promotional disease awareness/patient activation exhibition campaign we are working on in collaboration with Novartis. The campaign is aimed at reaching patients who are…
Research Funding – MPN Voice has a mission to encourage research for the benefit of MPN patients, for example, support for MOSAICC and the Mithridate study. Funding from MPN Voice is now available to support either the entirety or part of a specific research project that will benefit MPN patients. A maximum funding of £50,000…
Fiona’s Fund – supported by a legacy from a grateful patient who had a long relationship with MPN Voice, to be used to support educational needs of clinical staff, prioritising nurses, pharmacists, psychologists and allied health professionals. Specifically, funding will prioritise projects which can be shown to benefit MPN patient care, examples might include, but…