If you’re a young patient, I am sure this will be very familiar to you. Googling ‘what is an MPN?’. This might initially be in the build up to, or the aftermath of, your first haematology appointment. We’re often warned ‘don’t Google your symptoms’, but sometimes the pull of the web is just too strong…
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 Clinical Excellence (NICE) has decided that fedratinib is to be made available to the NHS. The drug, to be distributed under the name Inrebic, is…
This month I am joined by Gabor who is 30, has PV, and is my unofficial patient buddy. Gabor and I met at my first MPN Voice patient forum at the top of Guy’s hospital in 2016. Anyone who has attended a forum there will know that you get remarkable, panoramic views over the city…
Hello. My name’s Alice. I’m 26 and I have Essential Thrombocythaemia. Over the next year, I’ll be publishing monthly blog posts here on the MPN Voice website about what it’s like to be a young person with an MPN. I’ll be writing about my personal experience and journey of being diagnosed with an MPN, together…
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 doses. Separately adults over 50 years and those in original vaccine groups 1-9 are to be offered a so-called booster dose. The type of vaccine…
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 for receiving information about MPNs. All answers will be anonymous and we will use the results to develop the support needed to MPN patients and…
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 MPN Community are an important section where new patients and their families can be informed and encouraged by stories of how different people are living…
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 the various aspects regarding COVID vaccines in people with MPNs, including their opinions and experiences regarding vaccination which is of major interest to aid future…
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 to recruit patients with a known MPN – who have either not yet received a second dose OR are less than 6 weeks from second…
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 vaccine and causal relationship remains unclear. There are no confirmed reports of any specific platelet or thrombosis problems in MPN patients relating to the COVID…