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ISTH
Hybrid
2022
Symposium

Date and time:

10.07.22 at 13:15-14:30 BST

Type:

Congress:
Speakers:

Welcome and Introduction - (13:15-13:20 BST)

Current Schedule: Real-World Picture of the Haemophilia Standard of Care Today -
(13:20-13:40 BST)

Improving the Service: Understanding Unmet Needs in Quality of Life and Activity -
(13:40-14:00 BST)

Onward Journey: Innovative Tools to Measure Improvements - (14:00-14:20 BST)

Q&A, summary and close - (14:20-14:30 BST)

Dr Maria Elisa Mancuso

Dr Maria Elisa Mancuso (MD, PhD)

Center for Thrombosis and Hemorrhagic Diseases, IRCCS Humanitas Research Hospital, Milan, Italy


Dr Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Hemorrhagic Diseases of the IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She has obtained a post-graduate degree in Clinical and Experimental Hematology and a PhD in Clinical Methodology. Dr Mancuso is involved in clinical research and has published several original articles in peerreviewed journals, including The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is a reviewer for several peer-reviewed journals and member of the Editorial Board of the Journal of Thrombosis and Haemostasis. In addition, Dr Mancuso is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, AICE), medical member of the Inhibitor Working Group of the European Hemophilia Consortium, and co-chair of the ADVANCE Study Group. She has acted as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. Furthermore, she has been involved as principal and co-investigator in several clinical trials, and she takes clinical care of both children and adults with haemophilia. Dr Mancuso has a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.


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Prof Jerzy Windyga

Jerzy Windyga (Prof. Dr. Med.)

Department of Disorders of Hemostasis and Internal Diseases, Institute of Hematology and Transfusion Medicine, Warsaw, Poland


Professor Jerzy Windyga (Prof. Dr. Med.) is the Head of the Department of Disorders of Hemostasis and Internal Medicine in the Institute of Hematology and Transfusion Medicine, Warsaw, Poland. Professor Windyga obtained his medical degree from Warsaw Medical University. He later received his doctoral degree at the Institute of Hematology and Transfusion Medicine in Warsaw, where he also completed his medical specialisations in internal medicine, haematology, and laboratory haematology. He has been a member of the Board of Directors of the World Federation of Hemophilia (WFH, 2014–2018) and the Executive Board of the Polish Society of Haematology and Transfusion Medicine (2011–2019). In addition, Professor Windyga was the 2012–2016 Chair of the Hemophilia Twinning Committee of the WFH. He has also been a member of the EUHANET Steering Committee. In 2013, Professor Windyga was the President of the 6th Congress of EAHAD. Furthermore, Professor Windyga has served as a member of the Medical Board of the Polish Haemophilia Society (2003–2020). In 2019, he was appointed as the Chair of the Advisory Board of the National Program of Hemophilia and Allied Disorders in Poland 2019–2023. Professor Windyga has authored and co-authored over 400 papers, published both in Polish and international medical journals. His current research is focused on management of haemophilia and other inherited bleeding disorders, immune thrombocytopenia, thrombotic microangiopathies and porphyria, as well as management of venous thromboembolism with a focus on thrombophilia and rare venous thromboses.


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Dr Maria Elisa Mancuso

Prof Gili Kenet (MD)

National Hemophilia Center and Thrombosis Institute, Sheba Medical Center, Tel HaShomer; Amalia Biron Research Institute of Thrombosis & Hemostasis, Tel Aviv University, Tel Aviv, Israel


Professor Gili Kenet (MD) is a Paediatric Haematologist and works as the Director of the Israel National Hemophilia Center and Thrombosis Institute, Sheba Medical Center, and Director of the Amalia Biron Research Institute of Thrombosis and Hemostasis, Tel Aviv University. Professor Kenet is a former Chair of the Hematology Department at the Sackler Medical School, Tel Aviv University. Professor Kenet received her Medical Degree from the Hebrew University in Jerusalem. Her research projects have focused on neonatal haemostasis, childhood stroke and paediatric thrombophilia, as well as the research of new therapy modes applied for people with haemophilia and severe bleeding disorders. She has been awarded national grants for paediatric haematology and cancer research, the study of FVII replacement therapy mode of action, epidemiology of inhibitor evolution in haemophilia, personalised tailoring of bypass agent therapy and applying global haemostasis assays. Professor Kenet pioneered in gene therapy clinical trials in Israel and novel non-factor replacement drugs. Professor Kenet is an author of over 260 peer-reviewed scientific publications, review articles and book chapters. She is an active member of the World Federation of Hemophilia, Israeli Society of Pediatric Hematology and Oncology, and the American Society of Hematology, an active reviewer for high impact thrombosis journals and an editorial board member of the Haemophilia journal. Additionally, Professor Kenet is a Former Chairperson of the Israeli Society of Thrombosis and Hemostasis and Chairperson of the Pediatric and Peri-natal Hemostasis Scientific Subcommittee of ISTH. She currently co-chairs the FVIII/FIX and rare bleeding disorders Scientific Subcomittee of ISTH.


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Mark W. Skinner

Mr. Mark W. Skinner, (JD)

Department of Health Research Methods, Evidence and Impact, Institute for Policy Advancement Ltd and McMaster University, Washington, DC, USA


Mark W. Skinner (JD), is President/CEO of the Institute for Policy Advancement Ltd, specialising in patient-centered outcomes research. He is an Assistant Professor in the Department of Health Research Methods, Evidence and Impact at McMaster. He has previously led both national and international patient organisations, including the World Federation of Hemophilia and National Hemophilia Foundation where he currently serves on their Medical and Scientific Advisory Council. He is the principal investigator for the Patient Reported Outcomes Burdens and Experiences (PROBE) study, a global research project to enhance the direct patient voice in healthcare decision-making. He holds numerous roles as an advisor on critical blood safety and supply matters, including having served on the US Health and Human Services Advisory Committee on Blood and Tissue Safety and Availability. He serves on the board of the Institute for Clinical and Economic Review (ICER), the National Organization for Rare Disorders (NORD) and formerly the Patient Centered Outcomes Research Institute (PCORI) Advisory Panel on Rare Disease, where he was an inaugural member. Previously, he was Vice President State Programs at the American Insurance Association and Administrative Assistant/Chief of Staff to the Speaker of the Kansas House of Representatives. He holds degrees in Public and Business Administration from Kansas State University and Juris Doctor from Washburn University School of Law.


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