An extra vlocgast this month with Nona and Orlando talking about the MyMPNVoice App which has been developed in partnership with Sanius Health. The My MPN Voice App is designed to allow people living with MPNs to be able to capture their quality of life (QoL) data on a daily, weekly or monthly basis, to…
In Conversation With … Paul Goode, who talks to Nona about his PV and how it was diagnosed in March 2020. Paul tells Nona that in 2019 he was experiencing itchy skin, he searched the internet for some answers and made some changes to products he was using, but nothing helped. He then received an…
The video of the MPN Voice patients’ virtual forum, held on Thursday 19 October 2023, is now available to view. This online forum focussing on Young People and MPNs features talks from: Prof Claire Harrison, Guy’s & St Thomas’ NHS FT; Dr Anna Godfrey, Cambridge University Hospitals NHS FT; Dr Jonathan Lambert, University College London…
We are delighted to announce that NICE (the National Institute for Health and Care Excellence) has recently released Final Guidance recommending Ruxolitinib for treating Polycythaemia Vera (PV) in adults in England who cannot tolerate Hydroxycarbamide (also called Hydroxyurea) or when the condition is resistant to it. Ruxolitinib is already approved, in similar cases, for the treatment of PV patients in Scotland and…
Researchers at the University of Oxford are working on a project that could make huge improvements to the diagnosis of myeloproliferative neoplasms (MPNs). Using AI, the research could lead to people getting an accurate diagnosis sooner and could mean that changes in bone marrow are picked up earlier, hopefully this will mean earlier access to…
In this interview Dr Patrick Harrington, Consultant Haematologist, Guy’s & St Thomas’ Hospital, talks to Nona about Covid vaccines for MPN patients, he starts off by describing the research he carried out at the start of the Covid pandemic, with Covid being a new condition it was an area that needed a lot of research,…
Proposed research study investigating the relationship between Ruxolitinib and non-melanoma skin cancers, led by UK MPN doctors We need your help with some feedback. A group of UK MPN doctors are planning research to investigate the relationship between Ruxolitinib and skin cancers and they would be grateful for your views on their plans. Please can…
In Conversation With … Dr Claire Andrews, Consultant Haematologist, St Vincent’s Hospital, Dublin, who spoke to Nona about her role as haematologist in St Vincent’s, taking up the post 2 years ago. She told Nona that there is a large cohort of MPN patients in the hospital, with many different needs. Claire then spoke about…
We recently invited you to submit a wide variety of quotes about how you have been affected by all or some of the documented 10 symptoms associated with MPNs, for an exciting non-promotional disease awareness/patient activation exhibition campaign we are working on in collaboration with Novartis. The campaign is aimed at reaching patients who are…
Attention everyone! The government has confirmed there will be an Autumn 2023 COVID booster campaign. Those eligible for an Autumn 2023 booster are: All adults aged 65 years and over Residents in a care home for older adults People aged 6 months to 64 years in a clinical risk group, as laid out in the…