Since 2015, the EHC has organised annual Leadership Conferences to bring multiple generations of patient organisations’ leaders and staff members together for exchange of experiences, best practices and to share positions on common issues and challenges facing the European haemophilia community. Each year the programme consists of a mixture of presentations by leading health care professionals, interactive training and peer-to-peer sessions.
When: June 7th – 10th, 2018
Location: Thon Hotel, Brussels, Belgium
For whom: We kindly invite our NMOs to send 2-3 representatives from the below categories:
- One senior NMO leader (e.g. President, Vice-President, etc.)
- One young NMO leader (up to 30 years) who is committed to your NMO (e.g. youth group, etc.), for example this might be the person you sent or wanted to send to the EHC’s Youth Leadership Workshop, or it could be another young person.
- One paid staff person – if you have such a position – This person should be involved in high-level decision-making or programmes (e.g. CEO, Director, Communications or Programmes Manager) and should not be a person on a specific service contract such as accountants, office assistants, etc.
Event programme: Please find a draft programme here.
Registration: Registration is now open and can be done through the following link. Registration closes on Sunday, April 29th. Participant travel and accommodation are covered by the EHC.
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.
