Although there are currently no medications that can completely cure an MPN, there are many treatment options available to you. The kind of medication that you need depends on which MPN you have, your general health and your personal situation. Some people with “low risk” MPNs may only need minimal medication, while others will need…
CTI Biopharma have issued the top-line results of the PERSIST-2 study, which you can read here… Professor Claire Harrison says of the results: I am very happy to see these positive results for the effectiveness and safety of pacritinib which will now hopefully quickly become more widely available for patients with low blood counts and myelofibrosis.…
On Friday 13th May 2016 some amazing people abseiled 160 feet down the front of St Thomas’ Hospital, London, to raise money for MPN Voice. Between them they raised over £25,000!
Maz talks about how a buddy really helped her when she was diagnosed with ET
We are happy to share with everyone a very positive outcome from the NICE review of ruxolitinib. Particular thanks to everyone who responded to information requests, our patient attendees, patient advocacy teams and clinical experts. What has NICE said? Ruxolitinib (Jakavi) is recommended as a possible treatment for treating disease-related splenomegaly or symptoms in adults…
Marilyn tells us in this video why she wanted to be part of the Fundraising Team
Louise shares some tips that have helped her overcome some of the side effects of PV (polycythaemia vera)
17 March 2016 “Hello, my name is Helen Bass and I live in Hertford with my partner. Having played tennis and football at county level for many years, I then turned to running and crossfit training as a means of keeping fit. I like a challenge so I entered the ballot for the London Marathon,…
Led by Jon Mathias, co-chairperson for MPN Voice and Caroline Thomas an ET patient, we have been looking at ways to best represent patients affected by myeloproliferative neoplasms (MPNs) Advocacy means speaking on behalf of someone or something and in this case, we’re saying that one of MPN Voice’s roles, as our name suggests, is…
15 March 2016 “After my fiancé Lauren was diagnosed with Essential Thrombocythaemia in January 2014 at the age of 28, she went to MPN Voice for support and guidance. I was amazed and humbled by the support she received from you forums, especially after attending a patient group forum in London last year.She has struggled…