From June 29th to July 2nd 2017, the European Haemophilia Consortium (EHC) held its third Leadership Conference in Brussels, Belgium.
Over 60 established leaders, youth volunteers and staff of various EHC National Member Organisations (NMO) attended the four day event. The programme was designed in a way to provoke in-depth discussions and best-practice exchanges. It consisted of thematic sessions on gene therapy (presented by Professor Flora Peyvandi), women and bleeding disorders (presented by members of the EHC Women’s Committee), extended half-life products (presented by Dr Beatrice Nolan) and fundraising training (presented by Simona Biancu); peer-to-peer sessions on the following topics:
- Working with the pharmaceutical companies in time of new products coming into the market.
- Healthy working methods between staff and volunteers.
- Youth involvement in the NMO – how to evolve.
- Inter-generational dialogue in the haemophilia community and succession planning.
- Improving the quality of care (including how to build a relationship with a healthcare provider).
- Using the EDQM/Kreuth III/IV recommendations in patient advocacy
This year, the EHC added a new element to the programme – poster sessions. NMOs had the opportunity to display and present certain programmes/events that they organise in their respective countries for people with haemophilia and/or their families. This is an opportunity for best practice exchange where participants can take the ideas back to their societies and provide more support to their haemophilia community.
To view the entire programme, please click here.
The EHC provided live Russian interpretation throughout the duration of the conference for members of the Russian-speaking NMOs.
For pictures of the event, please visit the EHC Facebook page.
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.
