The Von Willebrand Disease (VWD) Committee was set up as a working group in 2020 to lead the ‘EHC VWD Platform for Europe.’ This platform promotes the formation of a European community of people with von Willebrand Disease (PwVWD) enabling them to find support and ‘identity’ while also promoting, building, and maintaining a network of European VWD advocates. The working group was transformed into a committee in 2023 which reflects its evolution and development over the past three years. The Committee aims to increase and improve diagnosis and treatment options nationally and enable those VWD advocates to work at the European level and with other European partners towards improving access to treatment and care for all PwVWD.
Discover the project ‘How Did That Happen?’ devoted to the first European VWD Awareness Day here.
The EHC VWD Committee is composed of:
Shannon Carey
Irish NMO
Manon Degenaar-Dujardin
Dutch NMO
Sunjeev Maini
UK NMO
Julia Rauscher
Austrian NMO
Joanne Traunter
UK NMO
Baiba Ziemele
Latvian NMO
The work of the EHC VWD Committee is supported by Daria Mironova, EHC Communications and Education Lead.
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.
