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…
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…
This ‘virtual’ forum focussed on Polycythaemia Vera (PV) and features talks from: Prof Claire Harrison, Guy’s & St Thomas’ NHS FT; Dr Anna Godfrey, Cambridge University Hospitals NHS FT; Prof Mary Frances McMullin, Queen’s University Belfast and Dr Rebecca Frewin, Gloucestershire Hospitals NHS FT, and a patient speaker, Charlie. Programme: Welcome and introduction to MPN…
This in-person forum was held in Galway, Ireland on Sat 24 June 2023, with MPN patients and family/friends attending from across Ireland. Programme Welcome and introduction to MPN Voice Who we are and what we do – Nona Baker, Co-Chair MPN Voice ET & PV an overview – Dr Aisling Nee, Consultant Haematologist, University Hospital,…
MPN Voice URGENTLY needs your help and feedback to support an application to NICE (National Institute for Health and Care Excellence) for the prescribing of Momelotinib to Myelofibrosis (MF) patients living in England & Wales. But we want to hear from you if you have MF regardless of where you live or whether you have…
Recently the Scottish Medicines Consortium (SMC) completed their re-appraisal of ropeginterferon alfa-2b (Besremi) for the treatment of Polycythaemia Vera (PV). MPN Voice contributed to the process with written submissions, including very valuable testimony from PV patients who are being treated with Besremi, and participation in the SMC Committee meeting to discuss the appraisal of this…