Miguel Crato – Steering Committee Member
Portugal
Miguel.Crato@ehc.eu
Miguel Crato was the President of the Associação Portuguesa de Hemofilia e de outras Coagulopatias Congénitas, the Portuguese National Member Organisation (NMO) of the European Haemophilia Consortium (EHC), from 2013 to 2020. Since October 2016, he has been a member of the EHC Steering Committee. He has been a keynote speaker at several EHC events, including the World Haemophilia Day event held in April 2014 at the Paul-Ehrlich-Institut in Frankfurt, Germany, giving insights into the importance of the patient perspective on the recommendations for the treatment of haemophilia emanating from the Wildbad Kreuth Consensus Initiative. These recommendations were later adopted as a resolution by the health ministers of the Council of Europe.
Miguel has also been a member of the EHC Inhibitor Working Group (IWG) since its inception in 2015. IWG aims to develop a European Inhibitor Network to bring together people affected by this rare bleeding disorder and inhibitors, develop best practices for the treatment and management of inhibitors, combat social isolation and promote better access to treatment and care.
As a volunteer, Miguel’s biggest priority has been to empower and help members of the rare bleeding disorder community achieve self-determination and approach their condition positively.
Miguel is a professional legal adviser and has severe haemophilia A and inhibitors.
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.
