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EURORDIS welcomes the final adoption by the Council of the European Union of the proposed Council Recommendation on European Action in the field of Rare Diseases

Paris 9 June 2009 - A European strategy that calls upon Member States to implement national plans for rare diseases, before the end of 2013, was adopted by the Council of Health Ministers of the EU today. The Council Recommendation is important because it calls for concerted action at EU and national level in order to:

• Ensure that rare diseases are adequately coded and classified
• Enhance research in the field of rare diseases
• Identify Centres of Expertise by the end of 2013 and foster their participation into European Reference Networks
• Support the pooling of expertise at European level
• Share assessments on the clinical added value of orphan drugs
• Foster patient empowerment by involving patients and their representatives at all stages of the decision-making process
• Ensure the sustainability of infrastructures developed for rare diseases

This adoption marks the culmination of a series of legislative declaratory acts which 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. Read more