Rare diseases to receive more attention at EU level
Rare diseases - officially classified as those affecting less than five people in ten thousand - are generally considered to have little impact on society as a whole. But rare diseases impose serious difficulties on the people who do suffer from them: Not only do sufferers and their families have to tackle the illness itself, but they are also confronted with a lack of understanding and knowledge of treatments for the disease. Now the European Union is taking action on rare diseases. Understanding of them, it says, must be improved, particularly as it is part of the EU's mission to combat dangers to public health. The Parliament and Council Decision outlining a five-year programme for action on rare diseases in the years 1999 to 2003, has now been published in the Official Journal. The programme is aimed at promoting collaborative research on diseases which occur on too small a scale for individual countries to be able to conduct the necessary analysis or intervention. This programme will form part of an overall approach which includes initiatives for research on orphan drugs (treatments for rare diseases) and medical research. The rare diseases action programme will aim to coordinate national measures and set common priorities for research. It should promote the dissemination of information and experience and the development of networks for researchers in this field. It will also aim to promote the mobilisation and motivation of those involved in research on rare diseases and those people directly or indirectly affected by them. The programme has been allocated a budget of 6.5 million euro and will be implemented with the cooperation of international organisations such as the World Health Organisation. A committee of representatives from the Member States will assist in the management of the programme, setting out an annual programme indicating priority areas for action and the arrangements, criteria, and procedures for selecting research projects on rare diseases to be funded by the EU. To promote international cooperation, the programme will also be open to participation by the associated countries of Central Europe as well as Cyprus and Malta.