In the field of rare diseases, the European Union has an extended added value due to its ability to coordinate Member States’ resources, information, expertise and knowledge, all vital elements for rare bleeding disorders. To this end, we at the EHC are working towards developing meaningful political relationships, not only at the Member State level but also at the European level. We are committed to provide EU policy-makers with information to ensure and promote evidence-based decision-making.
The EHC has worked together with Members of the European Parliament (MEP) to advocate for the needs and challenges of patients with rare bleeding disorders to be properly addressed on the political scene. This first led in 2015 to the informal formation of a group of MEPs supporting patients with rare bleeding disorders. Last year, in November 2017, this group was formalized to the MEP Rare Bleeding Disorders Group, and is currently formed by MEPs Heinz Becker (EPP, Austria), Cristian-Silviu Buşoi (EPP, Romania), Nessa Childers (S&D, Ireland), Dr Miroslav Mikolášik (EPP, Slovakia), Norica Nicolai (ALDE, Romania), Jana Žitňanská (ECR, Slovakia) and Dr Paul Rübig (EPP, Austria). In the past years multiple Round Table discussions were hosted by members of the MEP Rare Bleeding Disorders Group and parliamentary questions were tabled to call on the European Commission to further tackle issues in the field of rare bleeding disorders and novel therapies.
With the European Elections coming up we would like to take this opportunity to send our support to the MEPs who have been advocating the needs of the rare bleeding disorders community over the past years.
We would like to wish the MEPs of the MEP Rare Bleeding Disorders who are campaigning for a next term good fortune, Mrs. Norica Nicolai (ALDE, Romania), and Dr. Cristian-Silviu Buşoi (EPP, Romania). Below we have provided a short description of how both have supported EHC in the past years.
We would also like to thank the MEPs who have decided not to run in the European Parliament elections, Heinz Becker (EPP, Austria), Nessa Childers (S&D, Ireland), Dr Miroslav Mikolášik (EPP, Slovakia), Dr Paul Rübig (EPP, Austria), Jana Žitňanská (ECR, Slovakia) and Gesine Meissner (ALDE, Germany). We are grateful for your support and wish you all the best in the future.
Do you want to know more about what the European Union can do for you? Check out “What Europe does for me” and how European Parliament elections work (below) and don’t forget to vote!
Dr. Cristian-Silviu Buşoi (EPP, Romania) represents the Partidul Naţional Liberal in the European Parliament and seats in several Parliamentary committees including substituting for the Committee on Environment, Public Health and Food Safety (ENVI). Dr. Buşoi works on many legislative files which are strongly related to rare diseases, such as Health Technology Assessment (HTA) and files linked to budget proposals for research in health (European Social Fund +). Dr. Buşoi is an active member of the MEP Group for Rare Bleeding Disorders with his most recent activity of hosting the Round Table Discussion on ‘Switching from Standard Therapies: Where do Novel therapies fit in?’. Additionally, Dr. Buşoi supported a parliamentary question to ask the Commission on how it plans to increase accessibility to novel therapies for rare diseases.
Norica Nicolai (ALDE, Romania) represents the Partidul Alianța Liberalilor și Democraților (ALDE) Romania in the European Parliament. Mrs. Nicolai has greatly supported EHC through hosting and attending many Round Table discussions including hosting the latest Round Table discussion on ‘The Future of Comprehensive Care and Outcomes’. Additionally, Mrs. Nicolai feels very strongly about patient representation in the decision-making process and cooperation between different European Member States to overcome inequalities in access to treatment.
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.
