According to the Commission, about 36 million people in Europe are affected by a rare disease. Following a ministerial conference organised by the French Presidency of the EU Council on Monday 28 February, the need to take action on this issue was identified.

The European Commissioner for Health and Food Safety, Stella Kyriakides, called for increased European cooperation to ensure that all rare disease patients have access to the best treatment and care on European soil. Although the establishment of an effective European cross-border healthcare system will have to take into account the differences in development between Member States, the Commission strongly supports this development. It has allocated more than €2.4 billion, through its EU4Health program, to support multinational research projects related to rare diseases. To facilitate discussion on the project, the EU is relying on 24 European Reference Networks (ERNs) that bring together healthcare providers from across Europe. The Commission is working on how to improve cooperation on rare diseases and ERNs through the Cross-Border Healthcare Directive. It plans to provide €26 million in funding to improve the functioning of EU networks.

EU calls for stronger cooperation to fight rare diseases – EURACTIV.com