Community Research and Development Information Service - CORDIS

Programme funding

EUR 1,3 million
To contribute towards ensuring a high level of health protection against rare diseases by providing knowledge about these diseases, especially for patients and health professionals, by promoting and strengthening patient support groups, and by fostering the setting up of cluster response teams.


The specific objectives and actions are:

- Actions on Community information on rare diseases, to provide knowledge about rare diseases, especially for patients, health professionals and researchers, including:

. Encouragement and support for the establishment of a European rare diseases database and a list of resources that can be used for further information about the condition;

. Promoting access to information and coordinating existing information systems and services by supporting the setting up of and strengthening of local, regional, national and community networks;

. Organizing consensus meetings among health professionals in order to improve the early detection, recognition, intervention and prevention of rare diseases;

- Actions in support of patient and family support groups, to establish, foster and strengthen voluntary organizations involved in supporting people directly, or indirectly affected by rare disorders, including:

. Promoting the establishment of groups of people with the same rare conditions or those professionally involved to disseminate their experience, to facilitate training and to coordinate their activities at national and Community level;

. Promoting the groups' collaboration and networking, and the setting up and fostering of umbrella bodies, particularly focusing on efforts to encourage the continuity of work and cross-national cooperation;

- Actions on handling rare disease clusters, to put in place an effective monitoring system to ensure the rapid identification, assessment and handling of rare diseases and diseases clusters, including:

. Promoting the development of systems for the monitoring of rare diseases at Community level and the appropriate techniques for low-prevalence diseases, to meet both the demands of detection, treatment and research and those for relevant statistical monitoring;

. Promoting the creation and development of structures for providing appropriate responses for rare diseases and of networking and training for the investigation and handling of clusters;

. Supporting surveillance and early warning systems for clusters;

. Encouraging exchange of expertise in the evaluation, assessment, communication and management of clusters of rare diseases that are associated with exogenic causes.


The programme will be implemented during the period 1999 to 2003.

The Commission will ensure the implementation of the specific objectives and actions, in close cooperation with the Member States. To achieve this, it will cooperate with institutions active in the field of rare diseases under an action plan. In implementing the action plan, the Commission will be assisted by an advisory Committee, made up of representatives from each Member State and chaired by a Commission representative.

During the course of the programme, cooperation will be fostered with third countries and international organizations with particular expertise in the field of public health. The programme will be open to participation by the associated countries of Central Europe (CEC), in accordance with the conditions laid down in the Association Agreements or additional Protocols regarding their participation in Community programmes. The programme is open to participation by Cyprus and Malta on the basis of the same rules as are applied to EFTA countries, in accordance with the procedures to be agreed with those countries.

The Commission will take responsibility to ensure the monitoring and continuous evaluation of the programme. During the third year of the programme - and after its completion - it will present an evaluation report to the European Parliament and to the Council.
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