The EHC was up to a busy summer and month of September and to mark the end of the month, and ahead of our Conference, we give you a quick recap of all of our activities.
July
EHC representatives attended the Congress of the International Society of Thrombosis and Haemostasis (ISTH) held in Melbourne, Australia in July. There, the EHC held a booth to promote its activities.
Thierry Hoppe joined the EHC as its new Office Administrator. In this position, Thierry will help EHC CEO and VP Finance with the daily management of the EHC finances and human resources (HR) matters.
The EHC launched its survey on Von Willebrand Disease (VWD). The survey is comprised of two questionnaires, one for patient organisations and clinicians, and another one for individuals impacted by VWD. The individual’s questionnaire is available in English, Russian, French and Latvian.
August
Fiona Brennan, EHC Community Programmes Officer, attended the Hungarian NMO Summer Camp as part of the Youth Fellowship Programme.
Jo Eerens, EHC Membership Officer, travelled to Cyprus to meet with the local NMO and identify ways in which the EHC can support local activities.
EHC staff combined their team-building day with #thisway campaign by hiking through the caves of Han in Belgium.
EHC Inhibitor Programme Officer, Kristine Jansone, attended the Boston Inhibitor Summit organised by the National Hemophilia Foundation in the United States. EHC and NHF have been inviting representatives from the other organisation to their respective inhibitor events since 2015. This is to foster education and learn from each other on common issues faced by inhibitor patients and how best to tackle them.
September
EHC representatives attended the 10th edition of the BIC International Conference, which was held in conjunction with the third edition of the International Conference on Inhibitors in Haemophilia. EHC representatives learned about the latest scientific and medical data on inhibitor treatment.
EHC representatives also attended the Workshop on Novel and Gene Therapies organised by the National Hemophilia Foundation (NHF). The event took place in Washington, DC, United States. Attending this meeting allowed EHC staff and steering committee members to keep abreast with the latest medicinal products development in haemophilia.
EHC held its health-economics themed WorkshopWorkshop on Tenders and Procurements in Istanbul, Turkey. The WorkshopWorkshop targeted NMOs from Central European countries to provide them with knowledge and tools to become more involved in the economic assessment of novel medicinal technologies. Some thirty participants attended this year’s edition.
EHC representatives went to Ukraine to meet with the local NMO and identify ways in which EHC can support the local organisation and its activities.
EHC published five short clips highlighting difficulties and issues faced by women with bleeding disorders in its EHC Conversations on Women and Bleeding Disorders. The clips were made from the EHC movie on Women and Bleeding Disorders.
Brian O’Mahony, EHC President, was featured in a media campaign on Blood Health.
Jo Eerens, EHC Membership Officer, visited our members in Bosnia Herzegovina and presented during their General Assembly.
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.
