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,…
Proposed research study investigating the relationship between Ruxolitinib and non-melanoma skin cancers, led by UK MPN doctors We need your help with some feedback. A group of UK MPN doctors are planning research to investigate the relationship between Ruxolitinib and skin cancers and they would be grateful for your views on their plans. Please can…
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…
Attention everyone! The government has confirmed there will be an Autumn 2023 COVID booster campaign. Those eligible for an Autumn 2023 booster are: All adults aged 65 years and over Residents in a care home for older adults People aged 6 months to 64 years in a clinical risk group, as laid out in the…
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…
In Conversation With … Sarah Connolly, Candidate ANP Haematology, University Hospital Galway. This conversation took place at the MPN Voice Patients’ Forum in Galway, held on Sat 24 June 2023. Sarah spoke about taking up her position in January this year as the Candidate Advanced Nurse Practitioner in the haematology department in Galway Hospital, and…