Open letter to EC President Juncker
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
He was born in Ireland, educated and worked there until 1984 when he relocated to the UK. Jim continued his career in the UK until he retired in 2015 and returned to live in Ireland.
Jim has been married to Monica since 1983 and they have two sons and three grandchildren.
Jim’s career was in Finance, and he worked for 20 years as European financial Controller for a US multinational involved in liquid and gas analysis techniques. Before he retired in 2015, he managed a Chartered Accountancy practice with 2 offices and 70 employees.
In 2016 Jim joined the board of the Irish Haemophilia Society, trying to give something back for all the support they have offered for so many years. For 6 years Jim as involved in the Inhibitor Working Group of the EHC and has been rewarded by seeing the platform the group built and the community that was created!
He is now very happy total up the role of the advisor to the newly formed ERIN committee which will use the existing platform to hopefully build an inclusive community for all rare bleeding disorders while continuing the unfinished work for the inhibitor community, especially Haemophilia B inhibitors. He also wants to advocate for better planning and support for persons ageing with a bleeding disorder. This is a new situation thanks to better treatments, but the community is not yet ready to deal with it.
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.
Besides the ERIN work, I am a medical doctor currently working on a Ph.D. thesis in the field of multidrug resistant organisms and the faecal microbiome
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.
When not being with my family or working in front of three way too big monitors, you’ll find me sipping a good cup of coffee (ok, or four), reading books mainly in the field of mental health or working out.
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.
Amy’s two-year old son Logan was diagnosed with Glanzmann Thrombasthenia at 7 weeks old and since diagnosis Amy has become a passionate advocate for rare bleeding disorders. After Amy and her partner attended a Newly Diagnosed Weekend in Manchester, UK, she decided to stand for election as a trustee for the UK Haemophilia Society and joined the Board in November 2021.
As a parent of a child with GT Amy brings new outlook to the UK board, previously dominated by those with lived experience of haemophilia. She is passionate about supporting not just her son but the wider rare bleeding disorder community. As a mental health professional working in the National Health Service Amy also understands the workings of the healthcare sector and the huge importance of psychological support.
Working beyond the UK to support the rare disorders community Amy is on the steering committee for Haemnet’s Glanzmann’s 360 study.