MPN Voice YouTube channel, where you can find videos of leading MPN experts from around the world talking about living with MPNs; trials; medications; forums etc, and also videos of people who have a MPN talking about their own journey with their MPN.
(by clicking on each highlighted link you will be redirected to the video on our YouTube channel. MPN Voice cannot be held responsible for any content on YouTube that has not been uploaded by MPN Voice which may cause offence or distress and may contain inappropriate content, any such content should be reported to YouTube)
MPN Voice patients’ virtual forum – focussing on Young People and MPNs, 19 Oct 2023
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 Hospitals NHS FT; Gavin Maynard-Wyatt, Guy’s & St Thomas’ NHS FT and Alice Watson, Young Patient Network. Click here to view the video.
MPN Voice patients’ virtual forum – focus on Polycythaemia Vera (PV), 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 Mary Frances McMullin, Queen’s University Belfast and Dr Rebecca Frewin, Gloucestershire Hospitals NHS FT, and a patient speaker, Charlie. Click here to view the video.
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 we are and what we do – Nona Baker, Co-Chair MPN Voice; ET & PV an overview – Dr Aisling Nee, Consultant Haematologist, University Hospital, Limerick; New Treatment Opportunities – Prof Claire Harrison, Consultant Haematologist, Guy’s & St Thomas’ Hospital, London; Managing symptoms and support networks – Sarah Connolly, ANP Haematology, University Hospital Galway; Panel Q&A session; Clinical Trials – an overview – Dr Janusz Krawczyk, Consultant Haematologist, University Hospital, Galway; MF an overview – Dr Claire Andrews, Consultant Haematologist, St Vincent’s Hospital, Dublin; Patient talk – My ET Journey – Sinead Dolan; What causes MPNs – Prof Mary Frances McMullin, Consultant Haematologist, Queen’s University, Belfast; Patient talk – My PV Journey – Michal Molcho. Click here to view the video.
MPN Voice patients’ virtual forum, 25 May 2023, 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. Click here to view the video.
MPN Voice patients’ virtual forum, London, 30 Mar 23 – 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 Claire Harrison, Guy’s & St Thomas’ Hospital, London and Professor Adam Mead, University of Oxford. Click here to view the video.
MPN Voice patients’ virtual forum, London, 12 Jan 23 – Menopause, HRT and MPNs
This online forum focused on Menopause, HRT and MPNs, with guest speaker Debra Holloway, Nurse Consultant Gynaecology, Guy’s & St Thomas’ NHS Foundation Trust. Also on the panel were Prof Claire Harrison and ANP Claire Woodley, GSTT. Click here to view the video.
Living with MPNs Day 2022 – 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 and treatments from leading experts in the field of MPNs, from the UK, Europe and the USA, specialist haematology nurses and MPN patients. This was a hybrid event with an in-person audience and a global online audience viewing the live stream. Videos of each session are available to view, click here for more details.
MPN Voice patients’ webinar, Tue 8th November 2022, 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 who shares his transplant journey. Click here to view the video.
MPN Voice patients’ ‘virtual’ forum, Mon 11th 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 George, Physiotherapist, GSTT. Programme: Welcome from Nona Baker, co-chair MPN Voice, and Prof Claire Harrison, GSTT; Symptom overview and tracking – ANP Claire Woodley; Focus on fatigue – Lauren Urwin and Rachael George; Q&A session – speaker panel. Click here to view the video
MPN Voice patients’ in-person forum Cork, Sat 21 May 2022
This in-person forum was held in Cork, Ireland on Sat 21 May 2022, with MPN patients and family/friends attending from across Ireland.
Programme: Welcome and introduction to MPN Voice, who we are and what we do: Nona Baker, co-chair MPN Voice. Overview and history of MPNs and an overview of ET: Dr Eibhlin Conneally, Consultant Haematologist, St James’ Hospital, Dublin. Polycythaemia Vera an overview: Dr Clodagh Keohane, Consultant Haematologist, Mercy Hospital, Cork. Patient talk – my journey with ET: Christine McEvilly. Panel Q&A – questions from the audience. Managing symptoms and support networks: CNS Avril Gleeson, Haematology CNS, Mercy Hospital, Cork. Myelofibrosis an overview: Prof Claire Harrison, Consultant Haematologist, Guy’s & St Thomas’ Hospital, London (this was a pre-recorded presentation). Patient talk – my journey from ET to MF: Michele Griffin. What causes MPNs?: Prof Mary Frances McMullin, Consultant Haematologist, Queen’s University, Belfast. Click here to view the video.
MPN Voice patients’ ‘virtual’ forum, Fri 6th May 2022
This online forum featured talks from: Dr Andrew McGregor, Consultant Haematologist, Newcastle upon Tyne NHS FT; Dr Anna Green, Consultant Histopathologist, Guy’s & St Thomas’ NHS FT; Dr Dan Royston, Consultant Haematopathologist, John Radcliffe Hospital, Oxford. Programme: Welcome from Nona Baker, co-chair MPN Voice, and Prof Claire Harrison, Guy’s & St Thomas’ NHS FT; Blood cells and blood counts – Dr Andrew McGregor; Diagnostics and bone marrows – Dr Anna Green and Dr Dan Royston; Q&A session – speaker panel. Click here to view the video.
Guy’s & St Thomas’ MPN support group online forum: Latest news for COVID & how life can move towards normal – 8th March 2022
This online forum hosted by the GSTT MPN support group featured talks from: Prof Claire Harrison, ANP Claire Woodley and Georgia Parratt, Haematology Health Psychologist. Programme: Welcome from MPN Voice – Nona Baker, co-chair MPN Voice; Welcome from GSTT MPN team – Claire Woodley, GSTT; Latest information on COVID medicines – Claire Harrison, GSTT; Returning to normal – Georgia Parratt, GSTT Haematology Health Psychology Team; Q and A session. Click here to view the video.
MPN Voice Patients’ Forum – Belfast, Saturday 13th November 2021
This MPN Voice online patients’ forum features presentations from: Prof Mary Frances McMullin, Queen’s University Belfast, Dr Allister Foy and ANP Louise Gribben, Craigavon Area Hospital, Dr Patrick Harrington, Guy’s & St Thomas’ NHS FT/King’s College and Margaret Cooper, patient speaker. The forum was chaired by Nona Baker, Co-Chair MPN Voice. The presentations are: Introduction to MPN Voice, who we are and what we do – Nona Baker. Overview of MPNs – Dr Allister Foy. COVID Vaccines and Boosters – Dr Patrick Harrington. Patient Talk – Margaret Cooper. MPN Trials – Prof Mary Frances McMullin. Living with MPNs – what to expect & managing symptoms, physical and emotional – ANP Louise Gribben. A panel Q&A session where the medical team answered questions from the audience. Click here to view the video.
MPN Voice ‘Virtual’ Patients’ Forum – Liverpool/Chester/N Wales, held on Friday 15th October 2021
This MPN Voice online patients’ forum was hosted by Dr Nauman Butt and Dr Rachel Wells, The Clatterbridge Cancer Centre, Liverpool; Dr Arvind Pillai, The Countess of Chester Hospital, Chester and Dr Earnest Heartin and CNS Steph Jackson, Glan Clwyd Hospital, N Wales. The forum was chaired by Nona Baker, Co-Chair MPN Voice. The presentations are: Introduction to MPN Voice, who we are and what we do – Nona Baker. Objective symptom assessment in MPNs – presented by Dr Nauman Butt. Skin Cancer and MPNs – presented by Dr Nauman Butt, and Nona Baker who spoke about her experience of skin damage and strategies for skin protection. Interferon in MPN (ET/PV) – presented by Dr Arvind Pillai. COVID and MPNs – presented by Dr Earnest Heartin. A panel Q&A session where the medical team answered questions from the audience. The breakout groups are not included in this video for reasons of confidentiality and privacy. Click here to view the video.
MPN Voice Online Patients’ Forum – Dublin, held on Saturday 18th September 2021
This MPN Voice online patients’ forum, hosted by Dr Eibhlin Conneally, St James’ Hospital, Dublin and Dr Clodagh Keohane, Mercy University Hospital, Cork, features: Nona Baker, Co-Chair MPN Voice who talks about MPN Voice ‘who we are and what we do’. MPNs overview, treatments and COVID vaccine data update presented by Dr Eibhlin Conneally. MPN clinical trials and MOSAICC study update presented by Dr Clodagh Keohane. New research study – blood clotting and thrombosis in MPNs presented by Dr Roger Preston. Results of the patient and caregiver survey conducted in 2019/20 presented by ANP Mary Kelly. A patient talk from Natasha Labe, sharing her PV journey. A panel Q&A session where the medical team answered questions from the audience. The breakout groups are not included in this video for reasons of confidentiality and privacy. Click here to view the video.
MPN Voice ‘Virtual’ Patients’ Forum – London, held on Wednesday 25th August 2021
This MPN Voice ‘virtual’ patients’ forum hosted by the Guy’s and St Thomas’ Hospital team features: Prof Claire Harrison and Jon Mathias, Co-Chair MPN Voice, who talks about MPN Voice ‘who we are and what we do’. COVID outcomes, immunity and vaccination presented by Dr Patrick Harrington, Jamie Saunders and Dr Donal McClornan. The MOSAICC Study findings to date about causes of MPN and beyond presented by Profs Lesley Anderson and Mary Frances McMullin. Why it is important to track your MPN symptoms and how to do it presented by CNS Claire Woodley. An historical view of MPN presented by Prof Alessandro Vannucchi. Patient talks from Maz Campbell-Drew and Mark Taylor. A panel Q&A session where the medical team answered questions from the audience. The breakout groups are not included in this video for reasons of confidentiality and privacy. Click here to view video.
MPN Voice ‘Virtual’ Patients’ Forum – Manchester held on Monday 21st June 2021. The MPN Voice ‘virtual’ patients’ forum, Manchester, hosted by Prof Tim Somervaille, The Christie NHS Foundation Trust, Manchester, Dr Rachel Brown, Manchester Royal Infirmary, and Dr Rowena Thomas-Dewing, Salford Royal NHS Foundation Trust, their talks feature diagnosing and treatment of ET, PV and MF, and current trials and studies. Maz Campbell-Drew talks about MPN Voice, ‘who we are and what we do’ and Louise Broughton shares her experience of PV from her diagnosis and managing her symptoms. The panel Q&A session with questions from the audience, also included an update of the findings of the recent study conducted by Dr Bethan Psaila, Oxford, looking at COVID antibody response in people with MPNs. The forum is chaired by Jon Mathias, Co-Chair MPN Voice. (The breakout groups are not included in this video for reasons of confidentiality and privacy) Click here to view video.
MPN Voice ‘Virtual’ Patients’ Forum – London, held on Tuesday 2nd February 2021. This MPN Voice ‘virtual’ patients’ forum hosted by the Guy’s and St Thomas’ Hospital team features: Nona Baker, Co-Chair MPN Voice, who talks about MPN Voice ‘who we are and what we do’. Updates from ASH (American Society of Hematology), and origins of MPN presented by Prof Claire Harrison, Guy’s & St Thomas’ Hospital. New Therapies and the immune system and ‘hot off the press’ MPN immune responses to COVID-19 presented by Dr Donal McLornan, Guy’s & St Thomas’ Hospital. A patient talk – Caroline Thomas shared her experiences of ET and her role within advocacy and MPN Voice. A panel Q&A session where the medical team answered questions from the audience. (The breakout groups are not included in this video for reasons of confidentiality and privacy) Click here to view video.
MPN Voice ‘virtual’ patient support event – Ireland, held on Saturday 28th November 2020. This MPN Voice ‘virtual’ patient support event focussing on managing the emotional and wellbeing aspects for people with MPNs during the COVID-19 pandemic, keeping safe and living well during the uncertainty. With speakers from Cork and Dublin offering coping strategies and ways to stay safe. All information in the videos was correct as of 28th November 2020. click here for all videos
MPN Voice Patients’ ‘virtual’ forum – London. Held on Saturday 1st August 2020. This MPN Voice patients’ forum, hosted by the Guy’s team, featured updates on both COVID and MPN research, as well as tips as we move forward. click here for videos
Webinar for MPN patients relating to government guidance on COVID-19 recorded on 29th April 2020 – click here to view video
Webinar for MPN patients relating COVID-19 recorded on 22nd May 2020 – click here to view video
2017 Living with MPNs Day – full details of all the presentations and interviews with speakers and patients can be found here
2019 Living with MPNs Day – full details of all the presentations and interviews with speakers and patients can be found here