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PRESENTATIONS

Welcome and introduction to the day and MPN Voice – Nona Baker of MPN Voice provides an introduction to the Living with MPNs event and an overview of the work the charity are involved with

MPN Voice and Fundraising – Maz Campbell-Drew of MPN Voice talks about the fundraising activities the charity is involved in and the importance of raising money to further research into MPNs

Research funded by MPN Voice – Prof Mary Frances McMullin of Queen’s University Belfast presents updates from the MOSAICC study and further research in epidemiology as funded by MPN Voice

Living with a MPN: Self Management and the Management of Common MPN Related Symptoms  – Yvonne Francis and Claire Woodley, Clinical Nurse Specialists, Guy’s & St Thomas’ NHS Foundation Trust, talk about managing MPN symptoms and personalized care.  And Ms Tobe Aleksander talks about The Fatigue Project New Insights New Conversations, MPN patients’ experiences of fatigue in their own words.

Patient journey – Ms Megan Laird provides her experience with MPN and her approach to managing the condition day-to-day.  Her advice to other patients is offered and why events like the Living with MPNs day are so important

Management of PV, the role of Interferon – Prof Jean-Jacques Kiladjian of St Louis Hospital, Paris, talks about the role of interferon in the management of PV

New treatments for MPN and priority setting – Prof Adam Mead, University of Oxford talks about the general principles of developing new treatments and priority setting for future research

Panel discussion – the panel answered questions from patients in the audience and from those watching online

Management of Myelofibrosis (MF) – Prof Andreas Reiter, University Medical Centre Mannheim, Heidelberg, Germany talks about diagnosing and treatment of MF patients

Management of Essential Thrombocythaemia (ET) – Dr Anna Godfrey, Addenbrooke’s Hospital, Cambridge, talks about ET, what is it and why is it a problem?  How it is diagnosed and the different medications used

Improving outcomes for MPN – Prof Ruben Mesa of UT Health San Antonio MD Anderson Cancer Center talks about the challenges in MPN and what needs to be overcome to improve outcomes for patients.  Prof Mesa then provides an update on the current management of myelofibrosis (MF) and where he sees treatment options evolving in the future

INTERVIEWS WITH SPEAKERS AND PATIENTS

Living with MPNs day and MPN Voice – Nona Baker of MPN Voice talks to us about the importance of the Living with MPNs event and the type of talks presented.  Nona then provides a summary of the activities at MPN Voice and the advancements they would like to see in the management and treatment of MPNs in the future

MPN Voice and fundraising – Maz Campbell-Drew of MPN Voice talks about why it is important for the charity to support research in the MPN community.  Fundraising plays a pivotal role in supporting research efforts, Maz talks about the different types of fundraising activities the charity support and encourage

Fundraising for MPN Voice – Mr Jonathan Baker tells us about his fundraising experience and why it is important to raise awareness about MPNs and continuous research for treatments in this area

Living with a MPN – Ms Yvonne Francis, a clinical nurse specialist at Guy’s & St Thomas’ Hospital, London, talks about the process of helping patients adjust to having a diagnosis and coping with their treatment experience.  She talks about self management in MPN, what this means, and equipping patients with the skills to be able to manage and live with their condition

Patient interview – Ms Megan Laird shares her personal experience with MPN and advice for other patients.  She also talks about the importance of patients being able to access or attend events like the Living with MPNs day and her highlights of the day

Prof Ruben Mesa of UT Health San Antonio MD Anderson Cancer Center talks about the future for MPNs and what this means for patients

Prof Jean-Jacques Kiladjian of St Louis Hospital, Paris, talks about the role of interferon in PV management and why it is important for patients to understand how PV is managed

Dr Anna Godfrey, Addenbrooke’s Hospital, Cambridge, talks about what ET management entails and how this may impact treatment options. Looking ahead, she talks about what treatment and management advancements she would like to see

Research funded by MPN Voice – Prof Mary Frances McMullin of Queen’s University, Belfast, provides an overview of the MOSAICC pilot study looking at epidemiology data in MPN, through funding from MPN Voice, the results of the pilot study will allow for more investigations in this area across the UK on a larger scale