After 10 impactful years at the EHC, Amanda Bok has left the position of CEO.
Since her arrival in 2012 at the EHC, Amanda has left an incredible legacy. She helped the organization grow from one staff member to an amazingly skilled team of ten. Under Brian O’Mahony’s presidency, she managed to build up a structure able to face the needs of our members and advocate at the European level for better access to treatment for all. After Declan Noone’s election in 2019, and despite new challenges, she helped adjust to the COVID pandemic, assisting the staff and EHC members in a constantly evolving world.
She had a great ability to build strong relationships with European institutions, partners, and industry, which solidified EHC’s reputation and recognition. Thanks to her commitment, EHC is now considered a solid and impactful institution among policy and decision-makers, as well as a role model for the rare disease community.
With a very humane and caring approach, Amanda was also committed to supporting traditionally underserved parts of the community. Her efforts to support people with inhibitors, women, people with von Willebrand and extremely rare bleeding disorders, as well as youth were truly inspiring and have definitely been a game changer for all those concerned in our community.
Additionally, Amanda was a strong advocate for good governance. Her policies on funding, expenses, conflicts of interest, and codes of conduct created a strong foundation for the organisation. Transparency, equity, fair representation, and respect for privacy were never taken lightly.
Her great professionalism, her undeniable human qualities, her sense of duty and her commitment to our members and our external partners have enabled the EHC to rank among the greatest European institutions serving patients.
EHC’s Steering Committee is very grateful for Amanda’s incredible work and wishes her all the best in her future endeavours. We also would like to thank her husband and two children for their support during all those years.
Thank you, Amanda, for your lasting contribution to the community!
President and The Steering Committee
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.
