Community action on rare diseases
The Commission, as part of the programme of Community action on rare diseases, is seeking projects that address one of its four principal objectives. These are set out in four actions: - Action one: promote the development of, and access to, a coherent and complementary European information network on rare diseases, using the existing databases, among other things. The information is to comprise listing the disease name, synonyms, a general description of the disorder, symptoms, causes, epidemiological data, preventive measures, standard treatments, clinical trials, diagnostic laboratories and specialised consultations, research programmes and a list of sources that can be contacted for further information about the condition. The availability of this information must be made as widely known as possible, including via the Internet. - Action two: contribute to training and refresher courses for professionals in order to improve early detection, recognition, intervention and prevention in the field of rare diseases. - Action three: promote transnational collaboration and networking between groups of persons directly or indirectly affected by the same rare conditions or volunteers and professionals involved. Coordination should be encouraged at Community level in order to encourage continuity of work and trans-national cooperation. - Action four: support at Community level the monitoring of rare diseases in the Member States and early warning systems for clusters, as well as promoting the networking and training of experts concerned with the handling of rare disesases and with rapid response to the phenomenon of clusters.' The total budget for the programme over the period 1999 to 2003 is 6.5 million euro Further information can be found in an information pack which includes the draft Work Programme 2001. This can be obtained from: European Commission Programme 'rare diseases' Health and Consumer protection Directorate General Unit F/4 Communicable, rare and emerging diseases EUFO 3270 Bâtiment Jean Monnet Plateau du Kirchberg L-2920 Luxembourg Fax +352-4301-33248 Proposers are reminded to consult the official call text on the Official Journal of the European Communities at the reference given below.