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…
Friday 20 September 2024, 1 – 5 pm (arrival/registration from 1 pm with complimentary buffet lunch and refreshments) Venue The Liner Hotel Lord Nelson Street Liverpool L3 5QB THIS IS AN IN-PERSON FORUM NOT VIRTUAL/ONLINE You are welcome to attend this forum regardless of where you live or which hospital you attend, if you are…
Wednesday 9 October 2024, 1 pm – 5 pm (arrival/registration from 1 pm with complimentary buffet lunch) Venue The Royal Station Hotel Neville Street Newcastle-upon-Tyne NE1 5DH THIS IS AN IN-PERSON FORUM NOT VIRTUAL/ONLINE You are welcome to attend this forum regardless of where you live or which hospital you attend, if you are willing…
Tuesday 5 November 2024, 1 – 5 pm (arrival/registration from 1pm with complimentary buffet lunch) **FULLY BOOKED** we now have a waiting list in operation, if you would like to be added to the waiting list please register via the link below, you will be notified when a place becomes available. Venue Thackray Museum of…
The MPN Voice Fundraising Team would like to say a huge THANK YOU to everyone who took part in fundraising events and made donations in 2023, and to all your amazing supporters for their generosity. There have been many inspirational fundraising events all with very moving stories behind the motivation to raise incredible funds for…