Rare diseases are life-threatening or chronically debilitating diseases that have a low prevalence in population (less than 5 per 10 000 persons) and therefore need special efforts to tackle morbidity, perinatal and early mortality, and reduction of an individual’s quality of life.
Nowadays, between 27 and 36 million people in the European Union are suffering of a distinct rare disease.
Moreover, in the EU with 27 member states it is estimated that approximately 246 000 persons are affected by less frequently-occurring diseases affecting one out of 100 000 people.
It is of utmost concern that people affected by rare diseases have problems of accessibility to facilities and services they need.
The focus on rare diseases is at an embryonic stage. On 29 April 1999 the European Parliament and the Council undertook a decision adopting a programme of community action on rare diseases within the framework for action in the field of public health for the period 1 January 1999 to 31 December 2003.
To stress the importance of rare diseases as a key priority of the new Health Strategy 2008-2013 adopted in October 2007, the Commission highlighted in its 2007 Annual Policy Strategy the importance of enhancing the exchange and coordination of information at EU level.
The Commission’s Community action in favour of rare diseases is based on three pillars:
Enhancing the cooperation between EU programmes.
Encouraging the development of national health policies.
Ensuring the development of common policy guidelines.
In order to contribute to the Communication on a European Action on rare diseases that will be published in November 2008, the Commission launched a public consultation that will end on 14 February 2008.
For further information, please see the public consultation regarding European Action in the field of rare diseases.
For further information
DG SANCO-public consultation on rare diseases
EPHA related articles
Task force on rare diseases launched
WHO European Strategy for the Prevention and Control of Noncommunicable Diseases
WHO urges for action against preventable chronic diseases
Global Alliance to fight chronic respiratory diseases
