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.