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The HEMOSTASIS CONNECT European Collaborative Haemophilia Network (ECHN) Group announces the publication of their paper 'Changing paradigms of hemophilia care across larger specialized treatment centers in the European region' in the journal Therapeutic Advances in Hematology

 

This paper presents the results of a survey carried out by the European Collaborative Haemophilia Network (ECHN) to determine whether the paradigms of care have changed with the introduction of novel therapies for people with haemophilia.  The survey was conducted in 19 centres across 17 countries in the European region to:

  • Track recent changes changes in the haemophilia landscape
  • Determine the impact of these changes
  • Anticipate future changes following the advent of novel therapies

Jerzy Windyga is the Head of the Department of Disorders of Haemostasis and Internal Medicine in the Institute of Haematology and Transfusion Medicine, Warsaw, Poland. Prof. Windyga obtained his medical degree from Warsaw Medical University. He later received his doctoral degree at the Institute of Haematology and Blood Transfusion 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 WFH (2014-2018) and the Executive Board of the Polish Society of Haematology and Transfusion Medicine (2011-2019). He was the 2012–2016 chair of the Haemophilia Twinning Committee of the WFH. Dr Windyga has also been a member of the EUHANET Steering Committee. In 2013 Dr Windyga was the president of the 6th Congress of the European Association for Haemophilia and Allied Disorders (EAHAD). Since 2003, Professor Windyga has been a member of the Medical Board of the Polish Haemophilia Society, where he advises on recommendations for haemophilia management. In 2019 he has been appointed the Chair of the Advisory Board of the National Program of Haemophilia and Allied Disorders in Poland 2019-2023. He 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, porphyria as well as management of venous thromboembolism with a focus on thrombophilia and rare venous thromboses.

Prof. Jerzy Windyga has received financial support/sponsorship for research support, consultation, or speaker fees from the following companies:

Jerzy Windyga has no relevant financial disclosures

Cedric Hermans currently heads the Division of Haematology, the Haemostasis and Thrombosis Unit as well as the Haemophilia Centre of the Saint-Luc University Hospital in Brussels, Belgium. He was appointed Associate Professor at the Medical School of the Catholic University of Louvain in 2003, Full Professor in 2012 and Vice-Dean in 2015. Professor Hermans has (co)-authored more than 275 original articles in international journals and is a member of several scientific societies and international advisory boards and collaborative research projects. He was president of EAHAD and is currently member of the Board of Directors of the World Federation of Haemophilia and the Editor-in-Chief of the Haemophilia Journal. His main research interests lie in the area of haemostasis and thrombosis, especially clinical studies on the treatment modalities and the wide spectrum of complications of haemophilia in both developed and developing countries, as well as new anticoagulants and the management of thrombosis.

Prof Niamh O’Connell is a Consultant Haematologist at the National Coagulation Centre (NCC), St. James’s Hospital, Dublin, Ireland and has taken on the role of National Haemophilia Director since early 2018. The NCC is the lead comprehensive care centre for adults in Ireland and provides a hub of clinical services, research, training and education on a national basis. The NCC, in partnership with the Irish Haemophilia Society, is committed to delivering high quality and safe healthcare and to promoting healthy and successful living for people and their families living with haemophilia and other coagulation disorders. Research interests include clinical trials in novel therapies for haemophilia, clinical outcomes in haemophilia and application of information technology solutions in the management of haemophilia.

Dr Irena Preloznik Zupan completed Internal Medicine and Haematology specialisations and is a dedicated haematologist at the UMC Ljubljana, Slovenia. She is Head of the Outpatient Department, Day Care Hospital and Haemophilia Treatment Centre for adult patients at the Haematology Clinic, UMC Ljubljana, Slovenia. Since 1999, Prof Zupan has been giving regular lectures and tutorials in internal medicine and clinical haematology for Medicine and Pharmacy Faculty students at the UMC Ljubljana, Slovenia and is a mentor for PhD and MSc students. In recent years, she has been working intensively on the development of a day care hospital in the field of haematology. Together with the patient society she started the Slovenian Comprehensive Care Programme for Haemato-oncology Patients with a psychologist, clinical dietitian, physiotherapist, and physician. She is investigating the pathways and programmes that haematology patients need for a better quality of life. She is a member of the EHA, ADVANCE group, MPN&MPNr and is/was PI in many clinical trials. Her main clinical and research activity is focussed on haemostatic disorders, non-malignant haematology and myeloproliferative neoplasms.

Dr Ana Boban is Head of Haemophilia Centre at the University Hospital Centre Zagreb and Associate Professor of Internal Medicine at the School of Medicine of the University of Zagreb, Croatia. She has specialist degrees in Internal Medicine and Haematology. Dr Boban’s clinical work is in the field of benign haematology with the focus on bleeding disorders and thrombosis. Dr Boban is a member of national and international scientific and medical societies in the field of haemostasis and thrombosis and is currently serving as Executive Committee member of EAHAD. Dr Boban’s research interests include clinical haemophilia, carriers of haemophilia, von Willebrand disease, anticoagulant treatments and ITP.

Prof. Ana Boban has received financial support/sponsorship for research support, consultation, or speaker fees from the following companies:

Bayer, CSL Behring, Novo Nordisk, Octopharma, Pfizer, Roche, Sobi, Swixx Biopharma and Takeda. 

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Prof. Jerzy Windyga, Prof. Cedric Hermans
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This educational programme is supported by an Independent Educational Grant from Takeda
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