Public health: Community action programme 1999-2003 concerning rare diseases

In adopting the recommendation for second reading by Mr Guido VICECONTE (UPE, I), the European Parliament approved the common position of the Council with numerous amendments: - it again proposed a total allocation of ECU 14 million over five years (whereas the Council had proposed an allocation of only ECU 6.5 million); - Parliament reaffirmed that a Community approach, rather than a national approach, was the only effective means of tackling a problem whose scale in individual countries was too small to allow the proper action; - it stressed that diseases which were currently rare might in future spread to the community as a whole, which made it necessary to adopt a range of measures, such as the establishment of a rapid detection and control system; pooling of knowledge acquired in Europe; extension of the programme to genetic disorders and diseases caused by aetiological agents; the setting-up of rapid response teams; the setting-up of databases accessible to all (wide dissemination of information, particularly over the Internet, telephone helplines and free information pamphlets, etc.); training of professionals; promotion of research, etc. The European Parliament also wished agreement to be reached with the Council that, in managing projects, the Commission would be assisted by an advisory committee comprising - and this would be a first - representatives of patient support groups and voluntary organisations.�