EC Communication and Council Recommendation on Rare Diseases

voting handOn 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

Meeting 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.

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Page created: 09/03/2010
Page last updated: 03/05/2017
 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rare, Rare Diseases International est une initiative d'EURORDISRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect est une initiative d'EURORDIS RareConnect Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases