Staff of the European Haemophilia Consortium (EHC) attended the event organised by the European Organisation for Rare Diseases (EURORDIS) in Brussels to commemorate Rare Disease Day. This year’s theme was ‘Day-by-day hand-in-hand.’
Rare Disease Day takes place on the last day of February each year. The main objective of the commemoration is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
The event was attended by members of the EURORDIS but also by other stakeholders such as representatives from regulatory agencies and European Institutions as well as representatives from the pharmaceutical industry. It featured presentations on successful collaboration between patients and other stakeholders to improve access to treatment for people with rare diseases. Health Commissioner Mr Vytenis Andriukaitis opened the event by stating that the European Commission will launch a new initiative on rare diseases later in 2015.
This event is also widely celebrated by the Rare Disease community across Europe and internationally. More information on the EURORDIS event and national celebrations can be found here.