The European Haemophilia Consortium (EHC) held on 4 October 2015 its Annual General Meeting (AGM) in Belgrade, Serbia after its Annual Conference. During the meeting EHC National Member Organisations (NMOs) gathered to hear and approve the activity and financial reports for the previous year and to provide guidance on the EHC strategic direction for the year ahead. Here are a few key decisions made during the meeting.
Brian O’Mahony was re-elected President of the EHC for a second four-year term. Brian is the Chief Executive Officer of the Irish Haemophilia Society and a long-standing advocate of the haemophilia community having served as Chair of the Irish Haemophilia Society for 17 years and as President of the World Federation of Hemophilia (WFH) for ten years. Brian was first voted President of the EHC in 2011 and under his guidance the EHC considerably expanded its activities thanks to an increased funding base and the support of a growing staff team. Amongst the many activities carried out by the EHC under Brian’s Presidence, we note the introduction of workshops for the training and developments of NMOs in the areas of youth leadership, economics and new technologies in haemophilia care. Brian also ensured that the EHC Round Table of Stakeholders would continue to promote discussions about pressing issues in the haemophilia community such as inhibitor development, tenders and procurements for factors concentrates and patients involvement through National Haemophilia Councils. Furthermore, during his first term as President of the EHC, he continuously advocated for improving access to new therapies and optimal organisation of haemophilia care. Brian also provided support to NMOs in their national advocacy efforts in countries such as Latvia, Portugal, Ukraine and Romania where the first Memorandum of Undertanding between the EHC and a national government was signed . The EHC is delighted to see the re-election of Brian O’Mahony and wishes him a successful second term in this position.
The EHC NMOs were also informed that Mr Michael van der Linde was co-opted as Steering Committee member. A young volunteer with the Nederlandse Vereniging van Hemofilie-Patiënte (NVHP – the EHC Dutch NMO), Michael has joined the EHC Steering Committee to provide guidance on EHC youth-related activities including the EHC Youth Leadership Workshop. Michael was elected Chair of the EHC Youth Committee in 2013 and currently holds that position. The EHC membership was also informed that the EHC is currently looking for two additional youth candidates and an advisor to join the EHC Youth Committee.
EHC NMOs selected Vilnius (Lithuania) to hold the 30th EHC Annual Conference in 2017. The EHC would like to congratulate Lietuvos Hemofiljos Associja (the EHC Lithuanian NMO) for winning the bid to host the EHC 2017 Annual Conference. The EHC would also like to thank Hemofiliyalı Xəstələrin Respublika Assosiasiyası (the EHC Azeri NMO) for also bidding to host the event. This year’s EHC conference had the highest attendance rate yet with the highest number of NMO participants to date. The EHC hopes that it will welcome as many participants to its next Annual Conference, which will be held in Stavanger, Norway.
The EHC members have also voted to continue to hold the Leadership Conference Annually as a stand-alone event. The Leadership Conference was first piloted ahead of this year’s Annual Conference and brought together 70 participants from 38 EHC Members for two days to discuss common issues and share experiences. The pilot Leadership Conference focused on organisational matters, funding and tenders and procurement. The next Leadership Conference will be held in the first half of 2016.
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.
