The European Parliament (EP) meeting in Strasbourg has approved the conciliation agreement on a programme of Community action on rare diseases. A compromise on the respective demands of Council and EP had been reached when the joint Parliament/Council Conciliation Committee gave the green light to two programmes for Community action to combat rare diseases. The rare disease programme covers the five-year period 1999 to 2003. There are perhaps 5000 such diseases (such as Creutzfeldt-Jakob, Marfan syndrome and paramyloidosis), of which 80% are of genetic origin. Parliament persuaded Council to include in the text an acknowledgement that Community action might contribute unique added value to the treatment of problems, the scale of which in individual countries was too small to allow effective intervention. Council also agreed to the creation of a European information network on rare diseases, transnational collaboration between voluntary support groups, the use of high technology, information dissemination via the Internet and training for professionals (including those concerned with rapid response to the phenomenon of clusters). The programme will have a budget of 6.5 million euro.
Policy making and guidelines
26 April 1999