Hello everyone
It’s that time of year again for the round-up of the MPN Voice year, and once again it has been an amazing and very busy year.
Forums, in-person and virtual online – the in-person forum calendar was full this year, with 7 forums in Galway, Nottingham, Inverness, Llandudno, Newcastle-upon-Tyne, Leeds and Edinburgh, all were well attended by MPN patients, family and friends and healthcare professionals. We were so pleased to see so many people attending each forum, seeing familiar and many new faces, we will be announcing details for in-person forums around the UK and Ireland in 2024 very soon, and look forward to seeing you at one or more of them. The forum in Galway was filmed, the video can be viewed here.
We held 5 virtual online forums focussing on a varied range of topics, each forum was live streamed and filmed, with a global audience attending each one, you can view the videos of each forum on our YouTube channel. We will be announcing details for virtual online forums in 2024 very soon.
We would like to thank everyone who attended the forums, and hope that you continue to join us at the forums in 2024. We are also very grateful to all the teams who supported all the forums, we could not do them without you, thank you.
The 7th Living with MPNs Day held on Sat 18th Nov was an all-day hybrid event held in London, for MPN patients, their family and friends to attend in-person and online, to hear the latest news on trials and treatments from leading experts in the field of MPNs, from the UK, Europe and the USA, specialist haematology nurses and MPN patients. The videos for each session can be viewed on our YouTube channel.
Donations and Fundraising – once again you have supported us so generously by donating and taking part in some amazing fundraising events, the Fundraising Team were truly inspired by the variety of events. Your kindness and generosity is wonderful, and we thank you all so very much.
Trials and Research – our commitment to support research and trials remains strong. MPN Voice continued to support many research projects, including: the MASCOT study, a registry and coagulation based study for MPN patients with a large clot affecting their liver; MITHRIDATE which is a first line study for 596 patients with PV; and MOSAICC which is a large epidemiology study following on from the successful pilot.
We also launched a new initiative to fund research projects that will benefit MPN patients, the first phase of applications have been reviewed and assessed, and a grant has been awarded to two projects, we will bring you more news of these once they are underway. We were also able to set-up ‘Fiona’s Fund’ from a legacy from a grateful patient, to support the educational needs of clinical staff which will have a direct benefit to MPN patient care, prioritising nurses, pharmacists, psychologists and allied health professionals.
Trials and research studies benefit all of us with a MPN, if you want to take part in any trial or research study you can find out more here, or speak to your haematologist. Details for trials can also be found at ClinicalTrials.Gov.
Advocacy – after a protracted and complicated appraisal process, NICE finally decided that ruxolitinib (Jakavi) should be made available to PV patients in the UK. The decision brings us in line with Scotland and the rest of Europe who have had access to the drug for several years. Many thanks to everyone who contributed to the submission that we made at the beginning of the year. The patient voice is very important in these processes and we hope to be participating in more new drug appraisals in 2024.
We continue to collaborate with other patient groups around the world through our membership of the MPN Patient Advocates Network and our website, printed leaflets and social media activities are often used to help patients in less developed countries establish their own patient groups. The vibrant community we have created around MPN Voice is seen as a model and we look forward to making more international connections in the future.
Buddy support – our buddies are fabulous people who have supported many many people with MPNs, not just the newly diagnosed, but others who have had their MPN for a while, and also partners/family members of someone who has a MPN. We would like to thank all our buddies very much for the wonderful support they have given to others throughout 2023 and thank you also to the new buddies who joined the team this year. If you would like to become one of our buddies to offer support and help to other people please get in touch, and if you would like to have a buddy please email buddies@mpnvoice.org.uk.
HealthUnlocked – the online forum for people with MPNs, where you can ask questions; offer support; get comfort from other people; share coping strategies and lots more, the forum is monitored daily by the MPN Voice admin and medical team to ensure accuracy and safety of information being exchanged. The MPN Voice community continued to grow during 2023, taking the current membership to 10,012, with 13,864 posts to date! This is from a global audience, including USA, Canada, Australia and many more countries. If you are not yet part of the community you can join here.
Social media and monthly vlogcasts – our presence on our social media continued to grow this year with daily posts keeping our MPN community updated, informed and engaged, you can find us on Facebook, Instagram, X (formerly Twitter) and LinkedIn. Nona, co-chair of MPN Voice and a MPN patient herself, continued her monthly vlogcast series of informal conversations with MPN patients and healthcare professionals, details for all the vlogcasts can be found here.
The Young Patient Network for people with a MPN aged 40 and under – to bring together and support young people with MPNs, it’s designed to be a welcoming space where young patients can meet and connect with like-minded others, and receive information tailored to young patient experiences and challenges. The network emerged out of a recognition that being diagnosed with a MPN when you’re young can bring with it a unique set of questions, issues and concerns. If you’d like to be part of the Young Patient Network group on Facebook, you can request to join by clicking this link.
The My MPN Voice App – the only MPN app you’ll ever need! The app will allow you to track your MPN symptoms, capture your quality-of-life data, engage with your own health data in a different way and communicate and share this data with your own healthcare teams. You can also access MPN Voice news and updates, connect with our community and be part of the research. The app is still in the testing phase, we hope to be able to launch it in early 2024, if you would like to register you interest in the app please email info@mpnvoice.org.uk or complete this form. You can hear more about the app in a vlogcast with Orlando Agrippa from Sanius Health, who we are partnering with to bring you the app.
And finally, from Nona Baker, co-chair MPN Voice and Prof Claire Harrison, medical director MPN Voice, a festive video message of thanks to you all for the support you have given us during 2023. Click here to view the video.
Thank you everyone for your amazing support.
Merry Christmas, Seasons Greetings, Happy Holidays and a Happy New Year to you and your families
from all of us at MPN Voice
