EPIRARE Project, funded by the EC, officially started on 15 April 2011. Its aim is to build consensus and synergies to address regulatory, ethical and technical issues, associated with the registration of rare diseases patients in EU and to elaborate possible policy scenarios. The project is coordinated by the Italian National Institute of Health (ISS). The Information Centre for Rare Diseases and Orphan Drugs through BAPES is an associated partner in this project. For further information, please, visit the project official website.