This online forum will feature talks from: Claire Woodley, Advanced Nurse Practitioner, Guy’s & St Thomas’ Hospital (GSTT) and Lauren Urwin, Specialist Occupational Therapist, GSTT, and Rachael George, Physiotherapist, GSTT. …
This was the first in-person forum MPN Voice has held since the end of 2019, it was very well attended by MPN patients, with their families and friends, from across…
Antibody and antiviral treatments for people with blood cancer (updated 22 April 2022) People with blood cancer, which does include people with a MPN (who are taking medication for their MPN…
We have some important and very welcome news to share with you about a new drug for myelofibrosis patients. After a long and complicated appraisal process, the Scottish Medicines Association…
As of 21 February 2022 the JCVI recommends that people aged 12 and above who have blood cancer – MPN – should have five vaccine doses (three primary doses and…
MPN Voice is producing a recipe book designed by and for MPN patients and we need your help! Background Diet is so important in contributing to a healthy lifestyle –…
Breaking News – Another Treatment Option Approved for MPNs CTI BioPharma Announces FDA Accelerated Approval of VONJO™ (pacritinib) for the Treatment of Adult Patients with Myelofibrosis and Thrombocytopenia Pacritinib a…
Have you had COVID 19 infection? We need to find out more about how long covid affects people like you – can you help us? We would like to share…
The MOMENTUM study is a global, randomized, double-blind clinical trial evaluating momelotinib (MMB) in myelofibrosis patients who are symptomatic and anaemic and previously treated with an approved JAK inhibitor. The…
We have some important and very welcome news to share with you about a new drug for myelofibrosis patients. After a long and complicated appraisal process, the National Institute for…
As you will be aware the government has launched a 3rd dose of COVID vaccination for selected patients who may not have mounted an adequate response to the first two…
MPN Voice is committed to providing health care information and support through a variety of channels. Please can you take some time to help us to understand your communication preferences…
We need your help – will you share your story on our website? We are currently updating and reviewing the information on our website. The real stories shared by the…
We would like to thank everyone who completed the MPN COVID-19 vaccination survey in March. The survey was conducted by the teams at Guy’s & St Thomas’ Hospital to assess…
Researchers at Guy’s and St Thomas’ NHS Foundation Trust are carrying out research to investigate how patients with MPN and also CML respond to vaccination against Covid-19. They would like…
The MPN Voice medical advisory committee wants to share with our community the following: Thrombosis associated with low platelets is an exceedingly rare event in patients receiving the Oxford-AZ COVID…
After a careful review of the data, UK and International regulatory agencies confirmed yesterday (18.3.21) that the risk of blood clots after COVID vaccination is no greater than that seen…
The MPN Voice response to the article published on 11th March 2021 on the BBC news channel regarding a study assessing the effectiveness of the Pfizer vaccine and cancer patients…
We are aware that many of you are not on the Shielded Patient List and have been informed by your GP surgery that you will not be included in group…
COVID-19 Vaccine for people with MPNs (updated 11th Jan 2021) Having an MPN and any MPN treatment is not a contraindication to receiving the vaccine. Patients with MPN are in…
We are extremely excited to announce the launch of our newly designed MPN Voice website on December 4th, 2020. Our previous website, developed in 2014, was done so using a…
This MPN Voice patients’ forum is hosted by the Guy’s team and will feature updates on both COVID and MPN research, as well as tips as we move forward. We…
Due to the current situation regarding Coronavirus (COVID-19) we have decided to postpone the forums in Chippenham, Oxford and Galway, we hope to rearrange them later this year. At the…
We are very pleased to announce details for four forums to be held in: Chippenham Oxford Galway, Ireland Chester We are currently arranging other forums in locations around the UK,…
Jonathan and Pippa have made it, they have arrived in Plymouth aboard their yacht Sheevra, they have successfully completed the Rolex Fastnet Race 2019. Well done both of you and…
Day 4 Tue 6 Aug 19 at 07:30 hrs update from Jonathan and Pippa Ireland in sight. Long long best across rough Celtic sea. Hope to round Fastnet by midday.…
Day 2 of The Fastnet Race update from Jonathan and Pippa aboard Sheevra Just in phone range off Salcombe. Frustrating night with 6 hours no wind at all. Now bowling…
The boats taking part in the Fastnet Race are in Cowes and getting ready to set sail on Sat 3 August, including Sheevra, the boat being sailed by Jonathan and…
Saturday 3 August the Fastnet Race has started Update from Jonathan and Pippa – we started the race at 13:00 hrs, in a mass of boats including some awesome machines,…
Many of you will know Dr Jonathan Wallis who has been a Consultant Haematologist at the Freeman Hospital, Newcastle-upon-Tyne for many years. He has also been a member of the…
Professor Ruben Mesa, MD, Dr Robyn Scherber MD, and Dr Angela Fleischman MD, of the Mayo Clinic in Arizona invite you to participate in their survey, the NUTRIENT Trial. This…
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…
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…