European Commission calls for EU focus on rare diseases, setting strategy

The European Commission has adopted 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 European Union 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.

European Commissioner for Health, Androulla Vassiliou, said: "we want to bring patients with rare diseases out of the shadows. Expertise on rare diseases is fragmented across the Union. Even the very existence of some of these diseases is not fully recognized. That means that too many patients spend years of uncertainty before their conditions are correctly diagnosed and treated. This is an area where the added value of working together at European level is clear and concrete, and can make the difference between marginalization and proper treatment for millions of people across Europe."

5,000 to 8,000 rare diseases