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…
In Conversation With … Annette Matthews, who talks to Nona about her MPN journey, from ET to MF to having a stem cell transplant (SCT) in 2017 and life beyond. Annette tells Nona that once she was told about her transformation she went on a trial for a new drug, which initially did help but…
The month of May featured International Nurses’ Day – a celebration of the contributions and sacrifices made by nurses in the UK and around the world. Nurses’ Day is also an opportunity to raise awareness about the vital work nurses carry out on a daily basis, which is why I am delighted to be joined…
In Conversation With … Dr Arvind Pillai, Consultant Haematologist, The Countess of Chester Hospital, who talks to Nona about Interferon. Nona starts by asking Dr Pillai what it is and how effective it is for treating MPNs. Dr Pillai explains that Interferon used as a treatment, is a manmade copy of the interferon which is…
Recently the National Institute for Health and Care Excellence (NICE) completed their appraisal of Ruxolitinib (Jakavi) for the treatment of Polycythaemia Vera (PV). MPN Voice contributed to the process with a written submission and we were strongly represented at the committee meeting by a PV patient who has benefitted from the treatment. However, NICE have…