"In hardly any other area does an international network promise such enormous improvements as with rare diseases", EHFG President Günther Leiner explained. "The small number of cases in each country results in a frequent lack of consideration of rare diseases in the allocation of research funding and that physicians lack experience in diagnosis and therapy. For this reason medical progress is slower in this area than it actually should be and there is a relatively high risk that a rare disease is not discovered until it is too late and cannot be optimally treated."
Robert Schlögel, Director General in the Austrian Ministry of Health, emphasised the commitment of the Ministry: "Rare diseases always affect only a few people, yet they, too, are entitled to the best possible treatment for their afflictions, and with close international co-operation we can decisively improve the conditions for this."
These problems are to be responded to with internationally oriented centres of expertise. The experts' plan specifies the following points:
- The participating Central European countries agree to cross-border co-operation in research and care in the area of rare diseases.
- The countries develop a co-ordinated profile of requirements stipulating the criteria that have to be met by the future centres of expertise.
- In each of the participating countries centres of expertise for certain diseases or disease groups will be identified and established. Existing specialised hospitals and institutes are to be involved in order to utilise their knowledge as efficiently as possible.
- Networking the centres of expertise is meant specifically to facilitate a more intense transfer of know-how; patients are to be provided with simple and rapid options for taking advantage of the services in centres of expertise abroad, and the development of a patient database is to create a better basis for studies and research projects.
- In every country a co-ordination office is to be established to which physicians and patients can turn.