Were you diagnosed with an MPN (Myeloproliferative Neoplasm) before the age of 40? We want to hear from YOU! Your experiences are invaluable in helping us improve our resources and support for young MPN patients. Please share your thoughts on our latest leaflet – read here – and take just 2 minutes to complete our…
In Conversation with Mark Taylor, who talks to Nona about his PV and being a volunteer with MPN Voice, building up and maintaining the social media platforms. Mark begins by telling Nona that as a military air traffic controller he is subject to annual medicals, and following blood tests, he was diagnosed with JAKII positive…
In Conversation with the My MPN Voice app team – Dr Patrick Harrington, Debbie Street and Mark Taylor. The team talk to Nona about the recently launched My MPN Voice app: the objectives and goals of the app and associated research study that patients will be taking part in, via the app and the wearable…
The video of the MPN Voice patients’ virtual forum, held on Thursday 16 May 2024, is now available to view. This online forum focussing on the My MPN Voice App features presentations from: Prof Claire Harrison, Guy’s & St Thomas’ NHS FT; Dr Patrick Harrington, Guy’s & St Thomas’ NHS FT; ANP Claire Woodley, Guy’s…
In Conversation with Gill Thomas, who talks to Nona about being diagnosed with ET in 2004 and now has MF. Gill tells Nona about experiencing symptoms of fatigue which impacted on her life, particularly when she was working full time and how speaking to a counsellor helped her to be able to take more control…
Big News for the MPN Community! The moment you’ve been waiting for is finally here! The My MPN Voice App has officially landed! Watch the info-video to see what it looks like. For our UK friends who registered their interest, keep a close eye on your inbox. Our onboarding team will be reaching out to…
In Conversation with Mary Zazzi, who talks to Nona about being diagnosed with ET in 1983 when she was 17 years old, when her high platelet count was discovered after experiencing a DVT post knee surgery. It was very difficult for Mary to be told she had rare disease and was worried about her future…
The video of the MPN Voice patients’ virtual forum, held on Friday 8 March 2024, is now available to view. This online forum focussing on Post ASH (American Society of Hematology) Updates features talks from: Prof Claire Harrison, Guy’s & St Thomas’ NHS FT; Dr Jonathan Lambert, University College London Hospitals NHS FT; Dr Bethan…
We are delighted to announce that NICE (the National Institute for Health and Care Excellence) has recently released guidance recommending momelotinib as an option within the NHS for treating myelofibrosis-related splenomegaly (enlarged spleen) or symptoms in adults with intermediate-2 or high-risk myelofibrosis (MF) with moderate to severe anaemia, who have not had a JAK inhibitor…
In Conversation With … Dana Turner, who talks to Nona about being diagnosed with PV when she was 29 years old, with a history of high platelets from an early age and experiencing symptoms, including migraines with aura and Reynaud’s disease. Dana talks about the importance of advocating for herself and researching treatment options, leading…