EU health ministers have agreed a Recommendation which sets out a number of actions in the field of rare diseases. Rare diseases have been identified as an area where there is particular added value in EU collaboration. Smaller EU countries, in particular, are often unable to provide sustainable services for rare disease patients and rely on cooperation with their larger neighbours.
The Recommendation concentrates on supporting and strengthening EU countries' plans and strategies for responding to rare diseases, improving recognition and visibility of rare diseases, encouraging more research into rare diseases and forging links between centres of expertise and professionals in different countries through the creation of European reference networks.
The role of patient organisations is also highlighted as particularly important, given that rare disease patients can, by nature of their conditions, be particularly isolated.
The text is based on proposals put forward by the European Commission, together with a strategy on European action in the field of rare diseases, following a consultation on rare diseases in 2008. Together, the strategy and the Recommendation are intended to help overcome the sometimes fragmented nature of services and expertise in rare diseases, by strengthening cooperation and coordination at EU level.
Further to the Recommendation, the Commission announced on 30 November 2009 that it was establishing an EU Committee of Experts on Rare Diseases. The Committee will assist the Commission in formulating and implementing the Community's activities in this area, and will consist of one representative from each member state, representatives from patient's organisations, the pharmaceutical industry and experts in the area of rare diseases.
Next steps
Although the Recommendation is not legally enforcable, a deadline of 2013 is set by which the national governments are required to have implemented the actions set out. The European Commission will also be required to report on progress at this time, and there may be strong pressure from patient groups and the European Parliament for further, stronger action if they consider that not enough has been achieved.
The NHS European Office will continue to monitor developments in this area and to feed in UK priorities in rare diseases policy.