The European Haemophilia Consortium is excited to announce the launch of EHConversations, informative talks that are patient-focused.
The publication of the first series focuses on gene therapy and haemophilia from both patient and expert points of view. The five-part series has been created to help patients and the general public understand and demystify some of the concepts related to gene therapy in haemophilia.
This series is the first major piece of patient-focused discussion and education about gene therapy and haemophilia.
What is gene therapy? with Prof. Flora Peyvandi
An overview in gene therapy for haemophilia A and B with Dr. Paul Giangrande
How does a clinical trial in gene therapy for haemophilia work? with Dr. Dan Hart
Safety and gene therapy with Prof. Michael Makris
Gene therapy: A patient’s perspective with Jack Grehan
What is gene therapy? with Prof. Flora Peyvandi. Flora Peyvandi is the Director of the Haemophilia and Thrombosis Centre Angelo Bianchi Bonomi, Fondazione IRCSS Ca’ Granda Ospedale Maggiore Policlinico in Milan, Italy and Chair of the EHC Medical and Advisory Group (MAG).
An overview in gene therapy for haemopphilia A and B with Dr. Paul Giangrande. Paul Giangrande is the former Head of the Oxford Haemophilia Centre in the United Kingdom where he served as a consultant haematologist. From 2013 to 2018 he was the Chair of the EHC Medical Advisory Group (MAG).
How does a clinical trial in gene therapy for haemophilia work? with Dr. Dan Hart. Dan Hart is Honorary Consultant Haematologist at The Royal London Hospital Centre, Barts Health NHS Trust in London, United Kingdom. He is also a member of the EHC Medical and Scientific Advisory Group (MASAG).
Safety and gene therapy with Prof. Michael Makris. Michael Makris is the Director of the Sheffield Haemophilia and Thrombosis Centre in Sheffield, United Kingdom. He is a member of the EHC Medical Advisory Group (MAG).
Gene therapy: A patient’s perspective with Jack Grehan.
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
