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 ‘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