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…
This online forum focussed on Genetics and MPNs. The talks were presented by: Dr Andrew McGregor, Newcastle NHS FT, Dr Jon Lambert, University College London Hospitals NHS FT and Dr Anna Godfrey, Cambridge University Hospitals, NHS FT. Programme Welcome and introduction to MPN Voice – Maz Campbell-Drew, Administrator MPN Voice Introduction to genetics – Dr…
A very special interview with Nona Baker Co-Chair of MPN Voice and Professor Claire Harrison. In this interview Professor Claire Harrison shares breaking news with up-to-date results from the MAJIC PV Study. Following a recent media article it also clarifies and reassures the importance of existing, very successful therapies such as Hydroxycarbamide and Interferons, which…
Last month, Charlotte, Jamie, and Brad ran the London Marathon in support of MPN Voice. These three amazing runners raised more than £8,000 and if you scroll back through the charity’s recent social media posts, you’ll see photos of each of them proudly wearing their medals over MPN Voice t-shirts. This incredible feat is just…