Central European countries plan extensive co-operation for rare diseases

Salzburg 26 August 2009Leading experts from six Central European countries - Germany, Italy, Austria, Slovenia, Czech Republic, Hungary - discussed possibilities for a comprehensive improvement of cross-border co-operation in the treatment of rare diseases at an informal meeting in Salzburg. The "Informal Meeting on Rare Diseases" took place on 24 and 25 August as a follow-up to last year's meeting of numerous European Union health ministers in Salzburg. The possibility for the practical implementation of the close co-operation sought in this specialised area of medicine was discussed at the expert level. Both the meeting of ministers and the meeting of experts took place at the initiative of the Austrian Ministry of Health and the European Health Forum Gastein (EHFG), the most important health policy event in the European Union - 30 September to 2 October 2009 in Bad Hofgastein.


"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.

Co-operation is open for additional partners. "Smaller countries have especially big advantages resulting from co-operation in the area of cross-border diseases, thus in this regard we intend to play a vanguard role", Ministry of Health Director General Schlögel stated. "Our goal is for our initiative to be seized by as many European countries as possible and for that reason co-operation for every country is open."

The results of the meeting of experts will be presented to the health authorities of the countries represented. The aim is to be able to open up the first centre of expertise beginning in 2010.

EHFG European Health Forum Gastein im Sacher Salzburg 24.08.2009. Photo: Courtesy by Franz Neumayr.

Source: European Health Forum Gastein

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