MPN Voice 2024 round-up & Christmas message
Hello everyone It’s that time of year again for the round-up of the MPN Voice year. We have had a very busy and successful 2024 and want to thank you…
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MPN Voice ‘virtual’ forum Mon 6 Jan 25 – Post ASH latest updates
Monday 6 January 2025 4.30 – 6 pm (16:30 – 18:00 hrs) (GMT) REGISTRATION NOW OPEN! This MPN Voice ‘virtual’ forum will focus on Post ASH (American Society of Hematology)…
MAJIC-PV Study results
The MAJIC-PV Study is now completed and the results have been published Researchers wanted to find out how well Ruxolitinib worked compared with the best available therapy as a treatment…
In Conversation with… The Steering Committee Members of the MPN Advocates Network
In Conversation with The Steering Committee Members of the MPN Advocates Network. The MPN AN was founded in 2013 by representatives from several MPN patient support groups as a way…
In Conversation with… Craig Sowerby, PV patient and fundraiser
In Conversation with Craig Sowerby, who talks to Nona about his PV, when it was diagnosed and the treatment he has been receiving to manage it and why he decided…
MPN Voice Living with MPNs Day, Saturday 16 November – message to all attendees
In line with national recommendations, we do not mandate Covid testing or wearing of masks for our meetings. However, we do ask that all attendees follow common sense precautions, not…
Update on the Shortage of Pegasys for Treating MPNs
We are very pleased to advise that NHS England has confirmed that Besremi is now available as a treatment option for specific people with MPNs – essential thrombocythaemia (ET), polycythaemia…
Video of the MPN Voice patients’ virtual forum – focus on Myelofibrosis
The video of the MPN Voice patients’ virtual forum, held on 16 Oct 2024, is now available to view. This online forum focussing on MF features presentations from: Dr Andrew…
NICE Guidance on Fedratinib for the treatment of Myelofibrosis
We are delighted to announce that NICE (the National Institute for Health and Care Excellence) has recently released guidance recommending fedratinib as an option within the NHS for treating disease-related splenomegaly (enlarged spleen) or symptoms…
In Conversation with… Prof Claire Harrison regarding the temporary shortage of Interferon
In conversation with Prof Claire Harrison, Guy’s & St Thomas’ NHS FT, who clarifies the situation regarding the temporary shortage of Interferon, which is due to the manufacturing rights of…
Video of the MPN Voice patients’ virtual forum – focus on Skin Cancer
The video of the MPN Voice patients’ virtual forum, held on 11 September 2024, is now available to view. This online forum focussing on skin cancer features presentations from: Dr…
Interferon supplies for people with MPNs – update 04 Sep 24
Interferon supplies for people with MPNs – update 04 Sep 24 Pegylated interferon alfa 2a (Pegasys) is currently in short supply in the UK and worldwide. This is because the…
Update on review of Besremi for the treatment of PV in Ireland
The NCPE, the body that assesses and recommends drugs for use by the health services in Ireland, has recently released initial advice following their assessment of ropeginterferon alfa-2b (Besremi) for…
Interferon supplies – Update 19 August 2024
Interferon supplies – Update 19 August 2024 For some time we have been aware that there are international shortages of interferon alpha, in particular pegasys (pegylated interferon alpha 2a). We…
In Conversation with… Tobe Aleksander, PV patient, participating in the Mithridate Study
In Conversation with Tobe Aleksander, who talks to Nona about her PV, when it was diagnosed and the treatment she has been receiving to manage it and why she decided…
Shortage of Pegasys Interferon
We are aware that some countries may be experiencing a shortage in the supply of Pegasys Interferon and would like to reassure you various UK Health Bodies and MPN experts…
Calling All Young MPN Patients!
Were you diagnosed with an MPN (Myeloproliferative Neoplasm) before the age of 40? We want to hear from YOU! Your experiences are invaluable in helping us improve our resources and…
In Conversation with… Mark Taylor, PV patient and MPN Voice volunteer
In Conversation with Mark Taylor, who talks to Nona about his PV and being a volunteer with MPN Voice, building up and maintaining the social media platforms. Mark begins by…
In Conversation with… the My MPN Voice app team
In Conversation with the My MPN Voice app team – Dr Patrick Harrington, Debbie Street and Mark Taylor. The team talk to Nona about the recently launched My MPN Voice…
Video of the MPN Voice patients’ virtual forum – the My MPN Voice App
The video of the MPN Voice patients’ virtual forum, held on Thursday 16 May 2024, is now available to view. This online forum focussing on the My MPN Voice App…
In Conversation with… Gill Thomas, MF patient
In Conversation with Gill Thomas, who talks to Nona about being diagnosed with ET in 2004 and now has MF. Gill tells Nona about experiencing symptoms of fatigue which impacted…
The My MPN Voice App
Big News for the MPN Community! The moment you’ve been waiting for is finally here! The My MPN Voice App has officially landed! Watch the info-video to see what it…
In Conversation with… Mary Zazzi – ET patient, diagnosed in 1983
In Conversation with Mary Zazzi, who talks to Nona about being diagnosed with ET in 1983 when she was 17 years old, when her high platelet count was discovered after…
Video of the MPN Voice patients’ virtual forum – Post ASH Updates
The video of the MPN Voice patients’ virtual forum, held on Friday 8 March 2024, is now available to view. This online forum focussing on Post ASH (American Society of…
NICE Guidance on Momelotinib for the treatment of Myelofibrosis
We are delighted to announce that NICE (the National Institute for Health and Care Excellence) has recently released guidance recommending momelotinib as an option within the NHS for treating myelofibrosis-related…
In Conversation with… Dana Turner, a young MPN patient
In Conversation With … Dana Turner, who talks to Nona about being diagnosed with PV when she was 29 years old, with a history of high platelets from an early…
videos of the Living with MPNs Day Saturday 18th November 2023 in London
The 7th Living with MPNs Day, hosted by MPN Voice, was an all-day event held in London, for MPN patients, their family and friends to hear the latest news on trials…
In Conversation with…Gabor Posta, a young MPN patient
In Conversation With … Gabor Posta, who talks to Nona about being diagnosed with ET when he was aged 17, and then with PV about 5 years later and how…
In Conversation With … Orlando Agrippa, Head of Sanius Health, talking about the My MPN Voice App
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…
In Conversation With … Paul Goode
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…
Video of the MPN Voice patients’ virtual forum, Young People and MPNs
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…
NICE Guidance on Ruxolitinib for the treatment of Polycythaemia Vera
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…
What does Artificial Intelligence (AI) mean for people with MPNs?
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…
A very special interview with Dr Patrick Harrington regarding Covid vaccines and MPN patients
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…
In Conversation With … Dr Claire Andrews, Consultant Haematologist, St Vincent’s Hospital, Dublin
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…
Launch of the ‘Meet the MPN 10’ Artworks to raise awareness of the hidden symptoms of MPNs
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…
funding to support research projects
Research Funding – MPN Voice has a mission to encourage research for the benefit of MPN patients, for example, support for MOSAICC and the Mithridate study. Funding from MPN Voice…
Fiona’s Fund to support educational training for clinical staff
Fiona’s Fund – supported by a legacy from a grateful patient who had a long relationship with MPN Voice, to be used to support educational needs of clinical staff, prioritising…
In Conversation With … Sarah Connolly, Candidate ANP Haematology, University Hospital Galway
In Conversation With … Sarah Connolly, Candidate ANP Haematology, University Hospital Galway. This conversation took place at the MPN Voice Patients’ Forum in Galway, held on Sat 24 June 2023. …
Video of the ‘virtual’ forum focussing on PV, held on Thu 27 Jul 2023
This ‘virtual’ forum focussed on Polycythaemia Vera (PV) and features talks from: Prof Claire Harrison, Guy’s & St Thomas’ NHS FT; Dr Anna Godfrey, Cambridge University Hospitals NHS FT; Prof…
Video of the MPN Voice patients’ in-person forum Galway, Sat 24 June 2023
This in-person forum was held in Galway, Ireland on Sat 24 June 2023, with MPN patients and family/friends attending from across Ireland. Programme Welcome and introduction to MPN Voice Who…
Survey for Myelofibrosis Patients, their Families and Carers to support an application to NICE
MPN Voice URGENTLY needs your help and feedback to support an application to NICE (National Institute for Health and Care Excellence) for the prescribing of Momelotinib to Myelofibrosis (MF) patients…
Scottish Medicines Consortium Re-Appraisal of Besremi for the Treatment of PV
Recently the Scottish Medicines Consortium (SMC) completed their re-appraisal of ropeginterferon alfa-2b (Besremi) for the treatment of Polycythaemia Vera (PV). MPN Voice contributed to the process with written submissions, including…
In Conversation With … Annette Matthews
In Conversation With … Annette Matthews, who talks to Nona about her MPN journey, from ET to MF to having a stem cell transplant (SCT) in 2017 and life beyond. …
Q&A with… Claire Woodley
The month of May featured International Nurses’ Day – a celebration of the contributions and sacrifices made by nurses in the UK and around the world. Nurses’ Day is also…
In Conversation With … Dr Arvind Pillai
In Conversation With … Dr Arvind Pillai, Consultant Haematologist, The Countess of Chester Hospital, who talks to Nona about Interferon. Nona starts by asking Dr Pillai what it is and…
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…
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…
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…
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…
In Conversation With … Alisia O’Sullivan
In Conversation With … Alisia O’Sullivan, ET patient and MPN Voice volunteer, who talks to Nona about her ET and being involved with MPN Voice. Alisia was diagnosed with ET…
In Conversation With … Prof Lesley Anderson
In Conversation With … Prof Lesley Anderson, Chair in Health Data Science, Aberdeen Centre for Health Data Science and Chief Investigator for the MOSAICC Epidemiology Study, who talks to Nona…
video of the MPN Voice patients’ virtual forum, London – updates and latest research from the ASH annual meeting
This online forum focussed on updates and latest research in MPNs from the ASH (American Society of Hematology) annual meeting held in Dec 2022. The talks were presented by: Professor…
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…
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…
Launch of the MPN Voice Young Patient Network
Exciting news! MPN Voice is launching a young patient network that aims to bring together and support young people with MPNs. We know that being diagnosed at an early age…
Attending an MPN Voice Patients’ Forum
If you follow MPN Voice on social media, you’ll have seen that the charity has recently announced the first of a series of patients’ forums taking place this year. In…
In Conversation With … Dr Nauman Butt
In Conversation With … Dr Nauman Butt, Consultant Haematologist, The Clatterbridge Cancer Centre, Liverpool, who talks to Nona about side effects of MPNs and medications, particularly skin complications of itch…
video of the MPN Voice patients’ virtual forum, London, 12 Jan 23 – Menopause, HRT and MPNs
The video of the MPN Voice patients’ ‘virtual’ forum, held on Thu 12 Jan 23, is now available to view. This online forum focused on Menopause, HRT and MPNs, with…
In Conversation With … Maz Campbell-Drew
In Conversation With … Maz Campbell-Drew, ET patient and MPN Voice administrator, who talks to Nona about her ET diagnosis in 2003 to the present time, and being the MPN…
Preparing for and Attending an MPN Consultation
Living with an MPN means regular appointments with a haematology team for tests and check-ups. It can be daunting facing your first consultation. But even for patients who are frequent…
MPN Voice Recipe Book
MPN Voice provides support to patients and their families across the world who have been diagnosed with rare blood cancers called Myeloproliferative Neoplasms. The chronic nature of these diseases mean…
In Conversation With … Dr Eibhlin Conneally
In Conversation With … Dr Eibhlin Conneally, Consultant Haematologist, St James’ Hospital, Dublin, who talks to Nona about her interest in MPNs, and how active research has been in the…
videos of the Living with MPNs Day Saturday 5th November 2022 in London
The 6th Living with MPNs Day, hosted by MPN Voice, was an all-day event held in London, for MPN patients, their family and friends to hear the latest news on trials…
Video of the MPN Voice patients’ virtual webinar Tue 8 Nov 22 – Stem Cell Transplant
This online webinar is focussing on stem cell transplants (SCTs), with presentations from Dr Donal McLornan and Dr Andrew Innes, and Andrew Jedras, a patient speaker. Programme Welcome and introduction…
video of the MPN Voice patients’ ‘virtual’ forum, London, Wed 7 Sep 2022
This online forum focussing on ET – featured talks from: Dr Anna Godfrey, Cambridge University Hospitals; Prof Mary Frances McMullin, Queen’s University Belfast, Dr Joanne Ewing, University Hospitals Birmingham, Prof…
video of the MPN Voice patients’ virtual forum, London, 11 July 2022
This online forum – Symptom Management – featured talks from: Claire Woodley, Advanced Nurse Practitioner, Guy’s & St Thomas’ Hospital (GSTT) and Lauren Urwin, Specialist Occupational Therapist, GSTT, and Rachael…
Video of the MPN Voice patients’ in-person forum Cork, Sat 21 May 2022
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…
Fast access to COVID medicines for people with blood cancer
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…
Myelofibrosis patients in Scotland get access to Inrebic (Fedratinib) on the NHS
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…
4th dose COVID vaccination for people with MPNs
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 Recipe Book
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 –…
FDA Approval of VONJO™ (pacritinib)
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…
MyeloidScan – Long COVID in patients with myeloid blood cancers
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…
MOMENTUM study – top line data announced in a press release
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…
Myelofibrosis patients get access to Inrebic (Fedratinib) on the NHS
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…
3rd dose COVID vaccination for MPN patients
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…
Communication preferences survey
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…
Will you share your story on our website?
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 COVID-19 Vaccination Survey – results
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…
Research to investigate how patients with MPN and also CML respond to vaccination against Covid-19
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…
COVID Oxford Astra Zeneca vaccine and risk of blood clots
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…
COVID vaccines and risk of blood clots
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…
MPN Voice response to an article referencing a study assessing the effectiveness and timing of the Pfizer COVID vaccines
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…
How to be added to the Shielded Patient List – a letter for your GP
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
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…
ANNOUNCING THE LAUNCH OF OUR NEW WEBSITE
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…
Virtual patients’ forum from London Sat 1st August
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…
Forums postponed
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…
Four forums announced for 2020
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 & Pippa Wallis – Fastnet Race THEY MADE IT!
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…
Jonathan & Pippa Wallis – Fastnet Race Day 4 Tue 6 Aug
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.…
Jonathan & Pippa Wallis – Fastnet Race day 2 news Sun 4 Aug
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…
Jonathan & Pippa Wallis – Fastnet Race latest news Fri 02 Aug
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…
The Fastnet Race has started Sheevra and her crew are on their way!
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,…
Farewell and Bon Voyage to Dr Jonathan Wallis
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…
NUTRIENT Trial – survey
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…
Top Line Results from PERSIST-2 Phase 3 Trial of Pacritinib
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…
NICE Final guidance: Myelofibrosis – ruxolitinib (review of TA289) [831]
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…