MPN Voice
MPN Voice
  • Видео 157
  • Просмотров 81 224
MPN Voice patients’ virtual forum – focus on Myelofibrosis held on Wed 16 Oct 2024
This online forum focussing on MF features presentations from: Dr Andrew McGregor, Consultant Haematologist, Newcastle-upon-Tyne NHS FT, Dr Donal McLornan, Consultant Haematologist, UCLH, London, Dr Anna Godfrey, Consultant Haematologist, Cambridge NHS FT and Dr Alesia Kahn, Consultant Haematologist, Leeds Teaching Hospital Trust. Plus a patient speaker sharing his MPN journey.
INFORMATION CONTAINED IN THIS VIDEO WAS CORRECT AS OF 16 OCT 2024
VIEW THE VIDEO HERE
We would like to thank all the speakers for their support, we are very grateful to them for giving their time to support the MPN community in this way.
We hope that you enjoy watching the forum video, if you would like to send us an...
Просмотров: 851

Видео

In Conversation with… Prof Claire Harrison regarding the temporary shortage of Interferon16:28In Conversation with… Prof Claire Harrison regarding the temporary shortage of Interferon
In Conversation with… Prof Claire Harrison regarding the temporary shortage of Interferon
Просмотров 1,1 тыс.Месяц назад
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 Interferon transferring from Hoffmann-La Roche to Pharma& and the commissioning of a new manufacturing plant. Prof Harrison stresses that the current shortage is temporary and that it is hoped that this situ...
MPN Voice ‘virtual’ forum focus on Skin Cancer held on Wed 11 Sep 20241:12:54MPN Voice ‘virtual’ forum focus on Skin Cancer held on Wed 11 Sep 2024
MPN Voice ‘virtual’ forum focus on Skin Cancer held on Wed 11 Sep 2024
Просмотров 576Месяц назад
This online forum focussing on skin cancer features presentations from: Dr Jonathan Lambert, Consultant Haematologist, UCLH, London and Dr Elizabeth Kulakov, Consultant Dermatologist, UCLH, London. Plus a Q&A session chaired by Prof Claire Harrison, Guy’s & St Thomas’ NHS FT. INFORMATION CONTAINED IN THIS VIDEO WAS CORRECT AS OF 11 SEP 2024 We would like to thank all the speakers for their supp...
MPN-SVT Study - interviews with individuals diagnosed with MPN-SVT20:24MPN-SVT Study - interviews with individuals diagnosed with MPN-SVT
MPN-SVT Study - interviews with individuals diagnosed with MPN-SVT
Просмотров 4272 месяца назад
MPN-SVT is a rare condition where blood clots form in abdominal veins (splanchnic vein thrombosis) due to chronic bone marrow cancer (myeloproliferative neoplasm). In the UK, there are between 500-800 people with this condition. Death can result from underlying bone marrow cancer in 50% of patients and from gut or liver failure in others. Prompt treatment of the clot is essential to prevent fat...
In Conversation with… Tobe Aleksander, PV patient, participating in the Mithridate Study16:58In Conversation with… Tobe Aleksander, PV patient, participating in the Mithridate Study
In Conversation with… Tobe Aleksander, PV patient, participating in the Mithridate Study
Просмотров 3153 месяца назад
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 to take part in the Mithridate Study. This is part 1 of a series of 3 conversations that Tobe and Nona will have about Tobe’s experiences on the study - part 1 enrolling and starting the study; part 2 mid-way through the study; par...
In Conversation with… Mark Taylor, PV patient and MPN Voice volunteer11:50In Conversation with… Mark Taylor, PV patient and MPN Voice volunteer
In Conversation with… Mark Taylor, PV patient and MPN Voice volunteer
Просмотров 2504 месяца назад
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 telling Nona that as a military air traffic controller he is subject to annual medicals, and following blood tests, he was diagnosed with JAKII positive PV. His PV is managed with Clopidogrel and venesections, which are now...
In Conversation with… the My MPN Voice app team21:44In Conversation with… the My MPN Voice app team
In Conversation with… the My MPN Voice app team
Просмотров 2795 месяцев назад
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 app: • the objectives and goals of the app and associated research study that patients will be taking part in, via the app and the wearable devices, recording daily biometric data and scoring of symptoms • the benefits for patients...
MPN Voice virtual forum - My MPN Voice App held on 16 May 20241:25:12MPN Voice virtual forum - My MPN Voice App held on 16 May 2024
MPN Voice virtual forum - My MPN Voice App held on 16 May 2024
Просмотров 9615 месяцев назад
This online forum focussing on the My MPN Voice App features presentations from: Prof Claire Harrison, Guy’s & St Thomas’ NHS FT; Dr Patrick Harrington, Guy’s & St Thomas’ NHS FT; ANP Claire Woodley, Guy’s & St Thomas’ NHS FT; Debbie Street and Mark Taylor, MPN Voice. Plus a panel Q&A session. Also participating in the forum: our partners from the Sanius Health team. Programme: • Welcome and in...
In Conversation with… Gill Thomas, MF patient15:03In Conversation with… Gill Thomas, MF patient
In Conversation with… Gill Thomas, MF patient
Просмотров 5516 месяцев назад
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 on her life, particularly when she was working full time and how speaking to a counsellor helped her to be able to take more control and to think of taking Hydroxycarbamide as a positive thing as it was helping to control...
In Conversation with… Mary Zazzi - ET patient, diagnosed in 198317:25In Conversation with… Mary Zazzi - ET patient, diagnosed in 1983
In Conversation with… Mary Zazzi - ET patient, diagnosed in 1983
Просмотров 7477 месяцев назад
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 experiencing a DVT post knee surgery. It was very difficult for Mary to be told she had rare disease and was worried about her future but now 41 years later is feeling healthy and well. Mary also talks about how she had to plan her...
MPN Voice virtual Forum - post ASH Updates held on 8 March 241:32:29MPN Voice virtual Forum - post ASH Updates held on 8 March 24
MPN Voice virtual Forum - post ASH Updates held on 8 March 24
Просмотров 1,3 тыс.8 месяцев назад
This online forum focussing on Post ASH (American Society of Hematology) Updates features talks from: Prof Claire Harrison, Guy’s & St Thomas’ NHS FT; Dr Jonathan Lambert, University College London Hospitals NHS FT; Dr Bethan Psaila, Oxford University, and participating in the Q&A session, Dr Natalia Curto-Garcia, Guy’s & St Thomas’ NHS FT. www.hematology.org/ Programme: • Welcome and introduct...
In Conversation with… Dana Turner, a young MPN patient12:55In Conversation with… Dana Turner, a young MPN patient
In Conversation with… Dana Turner, a young MPN patient
Просмотров 5849 месяцев назад
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 age and experiencing symptoms, including migraines with aura and Reynaud’s disease. Dana talks about the importance of advocating for herself and researching treatment options, leading her to being prescribed Besremi in 2022. She hopes tha...
Festive message from Nona Baker, Co-Chair and Prof Claire Harrison, Medical Director, MPN Voice3:35Festive message from Nona Baker, Co-Chair and Prof Claire Harrison, Medical Director, MPN Voice
Festive message from Nona Baker, Co-Chair and Prof Claire Harrison, Medical Director, MPN Voice
Просмотров 20910 месяцев назад
A festive video message from Nona Baker (co-chair) and Prof Claire Harrison (medical director) to express their thanks to you all for the support you have given us during 2023.
Living with MPNs Day 181123 - Session 2 Scientific updates in MPN, Professor Adam Mead27:47Living with MPNs Day 181123 - Session 2 Scientific updates in MPN, Professor Adam Mead
Living with MPNs Day 181123 - Session 2 Scientific updates in MPN, Professor Adam Mead
Просмотров 56610 месяцев назад
Scientific updates in MPN, Professor Adam Mead, Oxford
Living with MPNS Day, 181123 Session 3 Patient Talk, Margaret Cooper9:08Living with MPNS Day, 181123 Session 3 Patient Talk, Margaret Cooper
Living with MPNS Day, 181123 Session 3 Patient Talk, Margaret Cooper
Просмотров 17110 месяцев назад
Patient who has been on a clinical trial, Margaret Cooper
Living with MPNS Day 181123, Session 4 MPN Targeted Immune Therapies Professor Beth Psaila19:53Living with MPNS Day 181123, Session 4 MPN Targeted Immune Therapies Professor Beth Psaila
Living with MPNS Day 181123, Session 4 MPN Targeted Immune Therapies Professor Beth Psaila
Просмотров 37710 месяцев назад
Living with MPNS Day 181123, Session 4 MPN Targeted Immune Therapies Professor Beth Psaila
Living with MPNS Day 181123 Session 5 Experiences of a young MPN patient Alice Watson9:35Living with MPNS Day 181123 Session 5 Experiences of a young MPN patient Alice Watson
Living with MPNS Day 181123 Session 5 Experiences of a young MPN patient Alice Watson
Просмотров 14710 месяцев назад
Living with MPNS Day 181123 Session 5 Experiences of a young MPN patient Alice Watson
Living with MPNS Day 181123, Session 6 Management of cardiac risk Dr Patrick Harrington21:18Living with MPNS Day 181123, Session 6 Management of cardiac risk Dr Patrick Harrington
Living with MPNS Day 181123, Session 6 Management of cardiac risk Dr Patrick Harrington
Просмотров 22210 месяцев назад
Living with MPNS Day 181123, Session 6 Management of cardiac risk Dr Patrick Harrington
Living with MPNs 181123 Session 7 carer’s perspective ANP Mary Kelly16:22Living with MPNs 181123 Session 7 carer’s perspective ANP Mary Kelly
Living with MPNs 181123 Session 7 carer’s perspective ANP Mary Kelly
Просмотров 6910 месяцев назад
Living with MPNs 181123 Session 7 carer’s perspective ANP Mary Kelly
Living with MPNs Day 181123 Session 8 Managing side effects of therapy Dr Nauman Butt22:35Living with MPNs Day 181123 Session 8 Managing side effects of therapy Dr Nauman Butt
Living with MPNs Day 181123 Session 8 Managing side effects of therapy Dr Nauman Butt
Просмотров 27610 месяцев назад
Living with MPNs Day 181123 Session 8 Managing side effects of therapy Dr Nauman Butt
Living with MPNs Day 181123 Session 9 MPN Trials in the UK, Professor Claire Harrison18:31Living with MPNs Day 181123 Session 9 MPN Trials in the UK, Professor Claire Harrison
Living with MPNs Day 181123 Session 9 MPN Trials in the UK, Professor Claire Harrison
Просмотров 14910 месяцев назад
Living with MPNs Day 181123 Session 9 MPN Trials in the UK, Professor Claire Harrison
Living with MPNs Day 181123 Session 10 My journey with ET and my experience using interferon10:25Living with MPNs Day 181123 Session 10 My journey with ET and my experience using interferon
Living with MPNs Day 181123 Session 10 My journey with ET and my experience using interferon
Просмотров 18610 месяцев назад
Living with MPNs Day 181123 Session 10 My journey with ET and my experience using interferon
Living with MPNs Day 181123 Session 11 MPN Voice objectives for 2024 and beyond14:20Living with MPNs Day 181123 Session 11 MPN Voice objectives for 2024 and beyond
Living with MPNs Day 181123 Session 11 MPN Voice objectives for 2024 and beyond
Просмотров 5210 месяцев назад
Living with MPNs Day 181123 Session 11 MPN Voice objectives for 2024 and beyond
Living with MPNs Day 181123 Session 12 Panel discussion, questions from the audience51:59Living with MPNs Day 181123 Session 12 Panel discussion, questions from the audience
Living with MPNs Day 181123 Session 12 Panel discussion, questions from the audience
Просмотров 30810 месяцев назад
Living with MPNs Day 181123 Session 12 Panel discussion, questions from the audience
Living with MPNs Day 181123 Session 13 New treatments targets for MPN Professor Serge Verstovsek33:25Living with MPNs Day 181123 Session 13 New treatments targets for MPN Professor Serge Verstovsek
Living with MPNs Day 181123 Session 13 New treatments targets for MPN Professor Serge Verstovsek
Просмотров 24010 месяцев назад
Living with MPNs Day 181123 Session 13 New treatments targets for MPN Professor Serge Verstovsek
Living with MPNs Day 181123 Session 1, welcome & introduction, Nona Baker, Co-chair MPN Voice8:40Living with MPNs Day 181123 Session 1, welcome & introduction, Nona Baker, Co-chair MPN Voice
Living with MPNs Day 181123 Session 1, welcome & introduction, Nona Baker, Co-chair MPN Voice
Просмотров 5410 месяцев назад
Living with MPNs Day 181123 Session 1, welcome & introduction, Nona Baker, Co-chair MPN Voice
In Conversation With … Gabor Posta, a young MPN patient15:41In Conversation With … Gabor Posta, a young MPN patient
In Conversation With … Gabor Posta, a young MPN patient
Просмотров 29611 месяцев назад
In Conversation With … Gabor Posta, a young MPN patient
In Conversation With … Orlando Agrippa, Head of Sanius Health, talking about the My MPN Voice App11:42In Conversation With … Orlando Agrippa, Head of Sanius Health, talking about the My MPN Voice App
In Conversation With … Orlando Agrippa, Head of Sanius Health, talking about the My MPN Voice App
Просмотров 36411 месяцев назад
In Conversation With … Orlando Agrippa, Head of Sanius Health, talking about the My MPN Voice App
In Conversation With ... Paul Goode15:32In Conversation With ... Paul Goode
In Conversation With ... Paul Goode
Просмотров 242Год назад
In Conversation With ... Paul Goode
MPN Voice patients’ virtual forum 19 Oct 23, Young People and MPNs1:24:33MPN Voice patients’ virtual forum 19 Oct 23, Young People and MPNs
MPN Voice patients’ virtual forum 19 Oct 23, Young People and MPNs
Просмотров 695Год назад
MPN Voice patients’ virtual forum 19 Oct 23, Young People and MPNs