The Members of the European Parliament (MEP) Rare Bleeding Disorders Group was established as an informal entity back in 2015 as a result of politicians’ will to collaborate and address the challenges faced by the rare bleeding disorders community. The group’s objectives include to further raise awareness on the topic, understand where concrete actions are needed and to identify how its members can cooperate to improve the situation for patients in this field.
The first meeting of the group took place on March 24th 2015 with all five members, at the time, present – Dr. Paul Rübig (EPP, Austria), Dr. Miroslav Mikolášik (EPP, Slovakia), Nessa Childers (S&D, Ireland), Heinz Becker (EPP, Austria) and Cristian-Silviu Buşoi (EPP, Romania). Since 2015, MEP Norica Nicolai (ALDE, Romania) has also become a member; in mid-2017, MEP Jana Žitňanská (ECR, Slovakia) joined the group as well.
On November 28th 2017, the group was officially formalized to give a further political thrust to their vision of improving the quality of life of people living with haemophilia and rare bleeding disorders.
Following the European elections of May 2019, several members of the group were no longer part of the European Parliament. The EHC wishes to thank them for their support of the work of the EHC.
The EHC is currently reaching out to new MEPs to join the informal group.
MEP Jana Žitňanská
European Conservatives and Reformists Group (ECR), Slovakia