Implementation Report on the Commission Communication on Rare Diseases

Pooling together knowledge and expertise, fostering research and co-operation and granting the authorisation of the best possible medicines for the whole European Union provide high added value in the field of rare diseases treatment. To achieve this goal in 2008, the Commission adopted a Communication on Rare Diseases, setting out an overall strategy to support Member States in diagnosing, treating and caring for EU citizens with rare diseases. Alongside the Communication, a Council Recommendation on action in the field of rare diseases was adopted a few months later, calling on Member States to put national strategies in place.

In the Communication and the Council Recommendation, the Commission was called upon to report on the implementation of the strategy. In order to collect information about the situation at national level, the Commission sent out an electronic questionnaire to Member States. Eighteen countries provided the requested information. Answers from Member States, together with information by the EUCERD Joint Action were collected and published as the “Report on the State of the Art of Rare Diseases Activities in Europe”. This report served as the main source of information for the Implementation Report.