On June 19th 2018, the European Haemophilia Consortium (EHC) held its second Round Table of Stakeholders of the year at the European Parliament in Brussels. The event focused on Women and Rare Bleeding disorders and was kindly hosted by Member of the European Parliament (MEP) Jana Žitňanská (ECR, Slovakia) and attended by MEPs Mrs Nessa Childers (S&D, Ireland), Dr Miroslav Mikolášik (EPP, Slovakia), Dr Cristian Bușoi (EPP, Romania) and Mrs Norica Nicolai (ALDE, Romania).
The event gave the opportunity to the EHC to raise awareness about the issues faced by women who are affected by rare bleeding disorders. This is an often-overlooked topic due to the lack of awareness amongst both the general public and non-specialist health care professionals. The event also unveiled the first findings of the 2017 EHC Survey on Women and Rare Bleeding Disorders. Speakers included health care professionals and women living with a rare bleeding disorder and was attended by close to 50 participants.
Below, you can consult the agenda, speakers’ biographies, presentations and other documents provided during the Round Table. Pictures from the event are on our Facebook page.
- Agenda
- Round Table report
- Presentations:
You can also find an article covering the event in the EHC NOW! section or by clicking here.
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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.
