NICE Appraisal of Ruxolitinib for treating PV

Recently the National Institute for Health and Care Excellence (NICE) completed their appraisal of Ruxolitinib (Jakavi) for the treatment of Polycythaemia Vera (PV).  MPN Voice contributed to the process with a written submission and we were strongly represented at the committee meeting by a PV patient who has benefitted from the treatment.  However, NICE have…

RIP, Marilyn Webster

Longstanding friend of MPN Voice and dedicated volunteer. With the permission of her husband Paul, MPN Voice is very sad to share the news that Marilyn passed away May 18th 2023. Marilyn has been part of the MPN community for many years, volunteering to co-ordinate and lead countless fundraising activities to support the financial needs…

Video of the MPN Voice patients’ virtual forum, Genetics and MPNs

This online forum focussed on Genetics and MPNs. The talks were presented by: Dr Andrew McGregor, Newcastle NHS FT, Dr Jon Lambert, University College London Hospitals NHS FT and Dr Anna Godfrey, Cambridge University Hospitals, NHS FT. Programme Welcome and introduction to MPN Voice – Maz Campbell-Drew, Administrator MPN Voice Introduction to genetics – Dr…

A very special interview with Nona Baker Co-Chair of MPN Voice and Professor Claire Harrison

A very special interview with Nona Baker Co-Chair of MPN Voice and Professor Claire Harrison.  In this interview Professor Claire Harrison shares breaking news with up-to-date results from the MAJIC PV Study. Following a recent media article it also clarifies and reassures the importance of existing, very successful therapies such as Hydroxycarbamide and Interferons, which…

Q&A with… Orlagh

Last month, Charlotte, Jamie, and Brad ran the London Marathon in support of MPN Voice. These three amazing runners raised more than £8,000 and if you scroll back through the charity’s recent social media posts, you’ll see photos of each of them proudly wearing their medals over MPN Voice t-shirts. This incredible feat is just…

Young Patient Network

MPN Voice has launched a young patient network and on Sunday 2nd April we held our first virtual meeting! It was a fantastic event, and we were thrilled to see so many young patients attending from the UK and around the world. The main part of the meeting was a breakout session, facilitating discussion between…

In Conversation With … CNS Avril Gleeson

In Conversation With … CNS Avril Gleeson, Haematology Clinical Nurse Specialist, Mercy University Hospital, Cork, Ireland, who talks to Nona about the telephone clinic for reviewing MPN patients, which was set-up before the COVID pandemic, and the benefits for the patients, particularly patients  who have challenges travelling to the hospital, or patients who are working…