Wednesday 23 April 2025, 4 – 8 pm (arrival/registration from 4 pm with complimentary buffet/refreshments) Venue: The Turnstone Suite, Cambridge Rugby Club & Conference Centre, Ellgia Fields, Grantchester Road, Cambridge, CB3 9ED 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…
Rare Disease Day is an annual observance day to raise awareness for the 300 million people worldwide living with a rare disease. What are the universal challenges faced by those living with a rare disease? The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis. The need…
Are you aged 18-39 and living with a MPN? Join our study to share your experiences and help shape the future of support for young patients. We would be delighted if you would consider taking part in a study focusing specifically on young people’s experiences of living with a diagnosis of MPN. Very few studies…
Tuesday 25 March 2025, 4 – 8 pm (arrival/registration from 4 pm with complimentary buffet/refreshments) Venue: The Holiday Inn Oxford, Peartree Roundabout, Woodstock Road, Oxford OX2 8JD 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…
We are delighted to announce that the recordings of the Young People and Adolescents with MPNs virtual forum are now available to view. The forum was a collaborative effort with our colleagues in Vivre avec une NMP, using AI-generated avatars for simultaneous transmission of the clinicians’ presentations in French, Spanish and English, alongside other sessions…
The video of the MPN Voice patients’ virtual forum – Post ASH 2024 update – held on 6 Jan 2025, is now available to view. The American Society of Hematology (ASH) conference serves as a pivotal platform for haematology professionals, attracting over 30,000 delegates and showcasing nearly 8,000 unique scientific abstracts, making it the largest…
The MAJIC-PV Study is now completed and the results have been published Researchers wanted to find out how well Ruxolitinib worked compared with the best available therapy as a treatment for people with PV who were at risk of developing blood clots that could lead to a heart attack or stroke. Specifically, the study looked…
In Conversation with The Steering Committee Members of the MPN Advocates Network. The MPN AN was founded in 2013 by representatives from several MPN patient support groups as a way of creating and maintaining collaboration between these organizations and providing a platform for joint activity. MPN AN is a leading international organization that operates for…
In Conversation with Craig Sowerby, who talks to Nona about his PV, when it was diagnosed and the treatment he has been receiving to manage it and why he decided to fundraise for MPN Voice, to raise awareness about MPNs and funds to support us. Craig recently completed a cycle ride from John O’Groats to…
We are very pleased to advise that NHS England has confirmed that Besremi is now available as a treatment option for specific people with MPNs – essential thrombocythaemia (ET), polycythaemia vera (PV) or myelofibrosis (MF) and for the duration of the Pegasys shortage. Doctors can now consider switching to the use of Besremi as an…