It is with great sadness that the EHC has learned about the passing of Dr Theis Bacher on March 13th 2020.
Theis Bacher was heavily involved in the Danish NMO – Danmarks Bløderforening – for many years, where his national community benefitted from both his professional experience as a doctor and his personal experience as a patient. Theis combined his educational and personal experience by conducting the first life-long study of patients with bleeding disorders in Denmark in 1980, a pivotal and fundamental piece of work highlighting the importance of treatment for people with bleeding disorders.
He was also a well-respected member of the European community, with the EHC fortunate to have Theis serve as an EHC Steering Committee for a number of years. The Steering Committee and broader bleeding disorder community greatly valued his knowledge, support and sense of humour.
Theis was an incredible person with a wealth of knowledge about people with bleeding disorders, treatment, data collection and research, always succeeding in explaining complex issues in a way his peers could understand.
His experience of life with a bleeding disorder encapsulated the challenges our community has faced for over 40 years with was always met with good grace, resilience and perseverance representing the best interests of his peers and the community at all times. His impact on those around him will last well into the future.
On behalf of the entire EHC community we extend our deepest and heartfelt condolences to the his family at this difficult time.
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.
