Two milestones in EU Rare Disease Policy

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On 11 November 2008, the European Commission adopted the Communication “Rare Diseases: Europe's Challenges“ along with a proposal for a EU Council Recommendation, addressed to the European Parliament, the Council [of the EU], the European Economic and Social Committee and the Committee of the Regions.

On 8 June, 2009, the Council of the European Union adopted the Council Recommendation on an action in the field of rare diseases: Press Release

These two policy documents constitute two key milestones in establishing a comprehensive and integrated strategy to support EU Member States on issues including diagnosis, treatment and care for rare disease patients throughout Europe. Furthermore, the Council Recommendation has encouraged EU Member States to adopt a national plan or strategy for rare diseases.

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. Read EURORDIS’ contribution to the draft Communication.


Both the Communication from the European Commission and the EU Council Recommendation marked 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 Council 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.

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Page created: 19/08/2009
Page last updated: 11/04/2022
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