Manon Degenaar-Dujardin, Vice-President Finance
the Netherlands
[email protected]
Manon Degenaar-Dujardin is from the Netherlands and has severe von Willebrand Disease (VWD), inherited from her parents. She is the mother of two sons who both have von Willebrand Disease.
Since 2000 she has been active as a volunteer in the haemophilia community in the Netherlands and internationally in various roles. She participated in youth activities and committees supporting women with bleeding disorders and people affected by VWD. She was the Vice-President of the board of the EHC Dutch National Patient Organisation (NMO) for the full term (from 2018 to 2021), as well as she was the CEO of the Dutch NMO from 2008 to 2012. She contributed to the HKZ certification of the haemophilia treatment centres in the Netherlands, creating the first national haemophilia guideline and the Von Willebrand Study in the Netherlands.
Since 2020, Manon has been a member and the chair of the EHC Von Willebrand Working Group (transformed into the EHC Von Willebrand Committee in 2023). She was co-opted to the EHC Steering Committee in 2021. In 2022, Manon was elected as EHC Vice-President of Finance.
Manon works as a consultant for the government and has a degree in museology, art history, and public administration.
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.
