Community action programme on rare diseases
The European Commission has adopted a proposal for a Decision on a Community action programme on rare diseases (COM(97) 225). The proposed programme would run for five years, from 1999 to 2003, and would have three aims: - To provide better information about rare diseases, especially for patients, health providers and researchers; - To establish, foster and strengthen voluntary organizations involved in supporting people affected by rare diseases; - To ensure the efficient handling of clusters or outbreaks that are characteristic of rare diseases. Rare diseases are those which are life-threatening or chronically debilitating, but are of such low prevalence (5 or less per 10,000 population) that special efforts are required to tackle them effectively. Action at Community level is of particular value since the size of the EU's population as a whole means that efforts to combat particular rare diseases can be pooled. By aggregating the numbers of sufferers at EU level, a much greater range of experience in the diagnosis, care and treatment of rare diseases will be available. Exchanging information of this type has the potential to lead to significant benefits for sufferers of rare diseases. Most rare diseases have no support organizations or dedicated research agencies, and therefore joint efforts at European level will help to fill this space.