Genetics of VWD

Speakers: Frank Leebeek, Jo Traunter

Prof. Dr. Frank Leebeek obtained his medical degree and PhD degree at the Erasmus University in Rotterdam The Netherlands in 1990. He subsequently worked as a post-doctoral fellow for 2 years at the University of North Carolina at Chapel Hill, USA. He was trained as a haematologist at the Erasmus University Medical Center in Rotterdam, where he became a staff member and was appointed full professor in 2009. He is chair of the Department of Haematology since 2017. He is coordinating a research team on haemostasis and thrombosis with several research topics, mainly inherited bleeding disorders, including Von Willebrand disease and haemophilia. He is steering committee member of several studies on new treatments for patients with bleedings disorders, including gene therapy. He is also the principal investigator of the Willebrand in the Netherlands (WiN) study and the WiN-Pro study.

He has been secretary of the Dutch Society of Thrombosis and Haemostasis, chairman of the Dutch Hemophilia Doctor's Organisation, and is currently a board member of the Dutch Society of Haematology and the European Hematology Association. He has been co-chair of the Scientific and Standardization Committee on Von Willebrand Factor of the International Society on Thrombosis and Haemostasis. Dr Leebeek has (co-)authored over 425 scientific publications listed on PubMed, 20 book chapters and contributed to national and international treatment guidelines on haemophilia, Von Willebrand's disease and venous thrombosis.

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Prof. Dr Jo Traunter is an academic at the University of Hull in the UK, her research and teaching focuses on Education, Childhood and Youth Studies. Jo is a mother of three and was diagnosed with VWD at the age of 37, despite a long and complex history of bleeding episodes, two of her children have since also received a diagnosis of the condition.

Jo has worked for the VWD working group since its conception and has recently taken responsibility for co-chairing the recently rebranded VWD committee alongside Julia Rauscher. Jo additionally works as trustee for the UK Haemophilia society, sits on the UK VWD working group and chairs the UK HS Women's subcommittee and associated Talking Red events.

Jo has a passion for changing the lived experience of those with VWD, working to raise awareness of the condition and support and advocate for the VWD community. Believing that it is imperative that we raise awareness of VWD and campaign for effective treatment options and access to care for everyone affected by the disorder, wherever they may live in the world, Jo states.