Europe Should Focus On Rare Diseases

Ruzanna Harutyunyan's picture

The European Commission adopted today 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.

The 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 recognised. 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 marginalisation and proper treatment for millions of people across Europe."

Rare diseases are conditions that affect fewer than 5 in every 10,000 people. There are between 5,000 and 8,000 such conditions. These conditions are predominantly genetic in origin, but also include rare cancers, auto-immune diseases and congenital malformations.


The Communication sets out a Community strategy for action in three main areas:

* improving recognition and visibility of rare diseases;

* supporting national plans for rare diseases in the Member States; and,

* Strengthening cooperation and coordination for rare diseases at European level.

European cooperation will help to bring together the scarce resources for rare diseases that are currently fragmented across individual countries in the EU. European action will help patients and professionals to collaborate across Member States in order to share and coordinate expertise and information. This will be achieved through for example, networks linking centres of expertise in different countries, and by making use of new information and communication technologies ("E-Health"). The Commission will build on successful existing actions, such as the previous health programme on rare diseases, the Research and Technological Development Framework Programmes, and the specific regulatory framework already in place to provide additional incentives for the development of 'orphan' drugs for these conditions.