With shock and great sadness, the EHC learned of the passing of Viktor Paskalev (1964-2024) on 24 April. He was the father of a son with severe haemophilia, and was one of the most active volunteers of the Bulgarian Haemophilia Association, the EHC Bulgarian NMO, for more than 20 years.
Chairman of the Management Board of the Association for the last 10 years, he devoted his professional expertise, time, and energy to work dedicated to a better future for people with haemophilia in Bulgaria.
Working tirelessly to improve diagnosis, access to treatment, and management of this rare disease, he contributed to the growth of a generation of active followers and like-minded people in their common struggle for a better life and future for the Bulgarian haemophilia community.
Viktor was a very active member of the community of patient organisations in Bulgaria. He initiated the unification of over 80 organisations under the umbrella organisation called NPO (National Patient Organisation) gaining national recognition and representation.
Open and honest to the point of pain, a friend always true to his word, he helped many people, and we are confident that his work will be continued.
Farewell to Viktor, he will be remembered and kept in our hearts!
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.
