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EC Communication and Council Recommendation on Rare Diseases

On 8 June, 2009, the European Council adopted the Council Recommendation on an action in the field of Rare Diseases. The adoption of the Council Recommendation represents an important milestone for rare disease patients all over Europe. Press Release

On 11 November 2008, the European Commission adopted the Communication Rare Diseases: Europe's Challenges along with a proposal for a European Council Recommendation. These two documents establish a comprehensive, integrated strategy to support EU Member States on issues including diagnosis, treatment and care for rare disease patients throughout Europe. Read More

The long road to this achievement began when the European Commission's Health and Consumer Directorate-General (DG SANCO) launched a public consultation regarding a European action in the field of rare diseases on 27 November 2007, receiving an unprecedented number of responses. Hundreds of stakeholders participated in the Public Consultation process for the Commission Communication on Rare Diseases. EURORDIS patient organisation members mobilised in large numbers to draft and send their responses. All contributions received were published on the Commission’s website. Read EURORDIS’ contribution to the draft Communication

The Communication was adopted, along with the proposal for a European Council Recommendation on a European action in the field of

rare diseases on 11 November 2008. The Council Recommendation was adopted by the European Council on 8 June, 2009, marking the culmination of a series of legislative declaratory acts that have paved the way towards the recognition of rare diseases as a public health priority and as an area of unique European added value for Community action.

The Recommendation sets out twenty specific recommendations gathered into seven main strategic areas: Plans and strategies in the field of rare diseases; Adequate definition, codification and inventorying of rare diseases; Research; Centres of expertise and European reference networks; Gathering the expertise on rare diseases at European level; Empowerment of patient organisations; and Sustainability.