Members of the Steering Committee of the European Haemophilia Consortium (EHC) regret to inform you that EHC’s serving President, Mr Declan Noone, has resigned.
Mr Noone was elected President in October 2019, months ahead of severe travel and personal movement restrictions imposed to curb the spread of COVID-19. His term was marked by the pandemic and a rapidly evolving treatment landscape with several novel technologies in late clinical development, culminating with the European conditional licensing of two haemophilia gene therapies in late 2022 and early 2023.
During his term, Mr Noone focused on providing members with accurate and easy-to-digest scientific and medical information, continued data-based advocacy, and focused on underserved patient populations such as women, people with von Willebrand Disease and extremely rare bleeding disorders.
Mr Noone’s term was planned to end in October 2023, with a scheduled President’s election during the EHC 2023 General Assembly.
The EHC Steering Committee wishes to thank Mr Noone for his service, guidance, friendship and data-oriented mind, which will forever remain part of his remarkable legacy in the work of the EHC.
To ensure continuity and progress, the EHC Steering Committee has unanimously appointed Ms Olivia Romero Lux to assume the role of President in an interim caretaking capacity until the end of the current term in October 2023. Ms Manon Degenaar-Dujardin will continue to fulfil her duties as the Vice President of Finance, a position she was elected into in October 2022. This decision has been made with the aim of optimising continuity in the ongoing work of the EHC.
For any additional questions, we kindly invite you to contact Mr Luis Teixeira, EHC CEO.
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.
