The European Haemophilia Consortium (EHC) is delighted to announce its newest project, the EHC Think Tank. This initiative aims to modernise the EHC advocacy activities by engaging with key opinion leaders and creating people-and-change-agent-driven solutions for the rare bleeding disorders community. The EHC Think Tank seeks to engage multiple healthcare stakeholder perspectives in co-designing trajectories of positive future change. In this way, the EHC external workstream will work with a long-term perspective and focus on processes rather than short-term campaigns and projects.
To lead this project, the EHC hired Think Tank Officer, Ms Naja Skouw-Rasmussen. A former EHC Steering Committee member (2015-2021), Naja brings to the EHC a wealth of experience gained from volunteering work at the national (Denmark) and international level.
Naja is a Danish national with a science background that she gained through academic training at the University of Copenhagen and the SOAS in London, UK.
EHC CEO Amanda Bok said: ‘By creating the Think Tank, we wish to revamp our advocacy work. We believe that to tackle the upcoming challenges in the rare bleeding disorders community, we will need to craft innovative solutions with the meaningful input and collaboration of all concerned stakeholders.‘ She continued: ‘Naja is a fantastic patient advocate with an impeccable track record of volunteer work at both the national and international level. She understands the needs of our community and has a great flair for out the box thinking. We are delighted that she decided to step down as Steering Committee member and join the operational side of the EHC.’
Naja’s joining the EHC leaves a vacant place on the EHC Steering Committee, who shall be voting for a replacement in the next few weeks.
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.
