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 Ireland, who were all extremely pleased to meet-up once again in-person, to talk to other people with MPNs and to hear the presentations given by the haematology consultants, haematology CNS and patient speakers. The forum was filmed (with the exception of the breakout groups) and is now available to view, see below.
The 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
We would like to thank all the MPN patients, their families and friends who attended the forum. We would also like to thank all the speakers for their support and for giving their very informative presentations, we couldn’t have done it without you. And our very special thanks to Christine and Michele, the patient speakers, for their very inspiring and moving patient stories.
We are currently arranging more in-person forums to be held around the UK this year. We will also continue to hold virtual online forums. Details will be announced once confirmed.
We look forward to seeing you at one or more of the forums, either in-person or online.
