The European Haemophilia Consortium (EHC) will celebrate the 2015 World Haemophilia Day (WHD) on 16 April in Dublin, Ireland. The event is organised one day ahead of the official WHD (17 April) as not to interfere with national activities of our National Member Organsiations. This year’s event will look at the preliminary findings of the EHC 2014 survey on: ‘Tenders and procurement’ looking at how medicinal products to treat haemophilia and other bleeding disorders are purchased in Europe.
The event will be held at the Freemason Hall in Dublin from 13.00 to 17.30 hrs. The event will feature the following topics and invited speakers:
- EHC tenders and procurement survey, Mr Brian O’Mahony, EHC President
- Outcomes of clinician and patient involvement in procurement, Dr Barry White, Irish National Haemophilia Centre
- Patient involvement in Serbia, Mrs Tatjana Markovic, Serbian National Member Organisation
- UK Tender Process, Prof Michael Makris, EHC Medical Advisory Group
- European Procurement Directive
To register, please send an email to laura.savini[at]ehc.eu. Please note that we welcome all stakeholders but that we limit the participation of industry representatives. If you are a representative from the pharmaceutical industry and would like to join this event, please directly contact EHC CEO Ms Amanda Bok (amanda.bok[at]ehc.eu).
The agenda of the event can be consulted here.
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.
