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Health & Consumer Voice - December - 2008 Edition

European focus on rare diseases

The European Commission adopted on 11 November a Communication and a proposal for a Council Recommendation on rare diseases setting out an overall Community strategy to support Member States in diagnosing, treating and caring for the 36 million EU citizens with rare diseases. The limited number of patients affected and the fragmentation of knowledge about them across the European Union, makes rare diseases a prime example of where working at European level is necessary and beneficial.

Rare diseases are conditions that affect fewer than 5 in every 0,000 people. These conditions are predominantly genetic in origin, but also include rare cancers, auto-immune diseases and congenital malformations.

The specificities of rare diseases - limited number of patients and scarcity and fragmentation of relevant knowledge and expertise - single them out as a distinctive area of very high European added-value. Furthermore, rare diseases remain largely invisible in healthcare information systems due to lack of appropriate coding and classification systems, which in turn imposes medical and financial barriers on receiving treatment. Misdiagnosis and non-diagnosis (often for as long as five years) are the main barriers faced by patients in the EU.

The need to pool together the still limited resources can therefore best be tackled and coordinated at EU level.

The Communication and Council Recommendation aims to provide a coordinated Community approach for ensuring effective and efficient recognition, prevention, diagnosis, treatment, care and research in the field of rare diseases in Europe. In order to achieve this, it is necessary to:

  • Improve the recognition and visibility on rare diseases.
  • Support policies on rare diseases in the Member States.
  • Develop European cooperation, coordination and regulation for rare diseases.

For further information please see: