In this short article, we wish to acknowledge and thank the decade-long work that former EHC CEO, Amanda Bok, has carried out. Laura Savini, EHC Advocacy Lead, shares her thoughts on Amanda’s accomplishments and the most marked changes since her joining.
After ten years of dedicated work, Amanda Bok, former CEO, left EHC.
The EHC volunteers and staff team are the key to the organisation’s success in making an impact on the European stage, and Amanda had an enormous impact on the EHC as an organisation, the European bleeding disorders community, and the Brussels rare disease scene. We wish to acknowledge her work and thank her for her dedication. This short article will outline the significant changes the EHC underwent under Amanda’s helm in the past decade.
Amanda joined the EHC in 2013. She was recruited by EHC’s former President, Brian O’Mahony, a job offer which was initially written on a napkin (very Glass-onion of him!). Amanda, who was based in Montreal, Canada, relocated with her husband and two kids to Brussels to take the EHC to another level, and boy, did she deliver on that promise.
When she joined, the EHC had one employee working part-time, our beloved Jo Eerens, and its main activities were the annual Conference and European round tables of stakeholders. The budget was approximately one-twentieth of its current state.
Amanda makes quite a first impression. She is quirky, thoughtful and brilliant. She excels in strategic thinking, can quickly assess a situation, and form a vision for the path forward. She also has a heart of gold and much empathy for others, which drives her every decision and action, professionally and personally. At every step of the way, she has prioritised the community’s well-being above it all. If I were to summarise the impact left by Amanda on the EHC during her ten-year mandate (an impossible task, but I will give it a go), one could pinpoint three particular areas: solidifying the recognition and reputation of the EHC with European partners, stakeholders and industry; putting forward underserved patient populations; and stressing the importance of strengthening good governance within EHC and its membership.
Even before she joined the EHC, Amanda saw the need and potential for EHC to become a more active partner with European institutions and stakeholders such as patients, clinicians, other healthcare interest groups and industry. Once she joined the EHC, she immediately began on this mandate and created, on behalf of the EHC, a strong network of contacts with European institutions, partners and industry. Limited by a word count, I will not be able to list all of her achievements. If I had to name a few, I would stress that she registered EHC to become an official partner with European institutions just before the arrival of novel therapies in haemophilia, which allowed EHC to provide feedback and create a dialogue with regulators on these medicines. She pushed for a series of Memoranda of Understanding, including with the United Nations Development Programme (UNDP), which proved beneficial for access to treatment in Ukraine.
Under Amanda and Brian’s leadership, more focus was put on supporting traditionally underserved parts of the community. It started with inhibitors. An officer, Kristine Jansone, was hired to run a programme for people with inhibitors, which flourished into the European Inhibitor Network, a Working Group and culminated in hosting the Inhibitor Summit in Barretstown. Following the inhibitors population, attention was also brought to women, people with von Willebrand and youth. The youth group was especially dear to Amanda’s heart as she strongly believed that youth needed to be trained to ensure the community’s future. Thus, when a group of youth came knocking on the EHC’s door to allow them to have a space to train, grow and exchange, she brought it to the Steering Committee and raised funds for a Workshop, featured them during the Youth Debates at the main EHC Conference and created a programme to keep them engaged in the long-term, the Youth Fellowship Programs. Many who participated in the initial training stayed involved in the community and became EHC Board Members or key opinion leaders.
Her third area of focus was the need for good governance. Again, here she was ahead of her time, seeing how much pressure and scrutiny patient organisations have faced regarding governance and finances in the past few years. Immediately, policies on funding, procedures on expenses, conflicts of interest, codes of conduct and more forms that I can name were created and rigorously updated yearly for employees, volunteers and even service providers. She cleaned the house as she expanded the house. She also wished to bring this message to the community, and the Leadership Conference was created, a place where EHC members can learn best practices from each other and where principles of good governance, representation and transparency can be regularly presented.
Although we were saddened to see Amanda leave, we are excited about what the future can bring and wish to thank her for her legacy and impact on the EHC. We are confident that the next CEO will continue building a strong organisation and take the community to new heights.
Please join us in wishing Amanda all the best in her future journey and thank her for her lasting contribution to the community!
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.
