Miguel Crato – EHC President
Portugal
[email protected]
Miguel Crato has been a member of the EHC Steering Committee since his election in 2016 and re-election in 2020. In October 2023 at the General Assembly of the EHC Miguel was elected as the new EHC President.
Miguel has also been a member of the EHC Inhibitor Working Group (IWG) since its establishment in 2015. In 2022, Miguel became a committee member of the groundbreaking European Rare and Inhibitors Network (ERIN). The ERIN project aims to foster best practices in treating and caring for those with extremely rare conditions, and enforce and help our National Member Organisations (NMO) with the differentiated tools to advocate for equality and equity within this underserved community.
Over the years, Miguel has served as both a chair and speaker in various EHC events since 2014. Currently, he represents the organisation in the EAHAD Gene Therapy Working Group and the EAHAD Centre Certification Panel, showcasing his commitment to advancing cutting-edge treatments and certifications in bleeding disorders. Miguel also represented EHC as an expert in several European Medicines Agency (EMA) expert meetings.
Prior to his involvement at the European level, Miguel served as the President of the Associação Portuguesa de Hemofilia e de outras Coagulopatias Congénitas, the Portuguese NMO, from 2012 to 2020. His leadership at the national level also extended to being a member of the Portuguese National Haemophilia Commission and representing his NMO as an expert in the INFARMED (the HTA body in Portugal).
In addition to his extensive involvement in various committees and working groups, Miguel is currently a member of the WFH Bylaws Committee, further revealing his dedication to advancing the global bleeding disorders community.
Miguel has severe haemophilia A with inhibitors and mild factor VII deficiency. As a patient representative and community member, he has consistently prioritised empowering NMOs with the necessary tools to take an active role in shaping bleeding disorder treatment and care in their respective countries. He strives to support NMO members in achieving self-determination, fostering scientific knowledge, and adopting a positive approach towards managing their conditions.
Outside of his advocacy and community work, Miguel is a professional legal adviser and a jurist, a testament to his determination to make a difference personally and professionally.
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.
