Last Friday, 24 June, following the referendum and the decision of a majority of citizens from the United Kingdom (UK) to leave the European Union (EU), we woke up in a different Europe that we neither expected nor hoped for. Besides the political, diplomatic, and economic consequences, the Brexit will have major implications for health care and medical research. These consequences were likely underestimated or even fully ignored by those who voted to leave the EU. This is certainly true for rare diseases such as haemophilia and it is imperative that decision makers now act responsibly to maintain the important developments that Europe has brought to the lives of patients. We would like to assure the rare bleeding disorder community including patients and healthcare professionals from across the EU and the UK that the European Association for Haemophilia and Allied Disorders (EAHAD) and the European Haemophilia Consortium (EHC) remain committed to adequately representing them, improving patients’ lives, and furthering scientific and medical research.
EAHAD and the EHC were both established with an aim of utilising and synergising the knowledge and expertise of healthcare professionals and patient advocates from across Europe to improve the quality of life of people living with rare bleeding disorders. This long-standing collaboration between countries and among patients and healthcare professionals is evidenced by multiple initiatives that EAHAD and the EHC have led and participated in such as the European safety surveillance registry (EUHASS); the European Haemophilia Network (EUHANET) platform; and the establishment of the European Principles of Haemophilia Care and the Wildbad Kreuth recommendations adopted by the European Directorate for the Quality of Medicines and Healthcare (EDQM). These efforts have resulted in widespread recognition of the bleeding disorders community as one of the most well-coordinated and progressive groups in the rare disease area.
The bleeding disorders field has benefited significantly from the major, unique, and longstanding expertise in haemophilia in the UK where major scientific findings and models of multidisciplinary care and management have been successfully developed. On an organisational level, both EAHAD and the EHC have been made stronger by the dedication and leadership of our many active members from across the UK.
Despite the results of the UK referendum, our organisations remain committed to working together with our colleagues in the UK to preserve and further develop strong relations between all European countries. This is our wish as presidents of these organisations, and one that we believe is echoed by our colleagues involved in rare bleeding disorders across the diversity of our continent.
Brian O’Mahony, President EHC & Cedric Hermans, President EAHAD
Consult the PDF version of this statement 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.
