Rare Disease Center

National Coordinating Researchgroup of Rare Diseases

After the approval of the Council of the Faculty of Medicine on the 27th February 2009 an agreement was concluded between the National Centre for Healthcare Audit and Inspection of the National Public Health Service (ÁNTSZ OSZMK) and the Department of Medical Genetics, Faculty of Medicine, University of Pécs. The agreement states that the Rare Disease Center of the ÁNTSZ OSZMK cooperates with the University of Pécs in respect of assignments not executed by the authorities, mainly in case of various research projects. Towards the aims and allotted obligations of the Agreement, the University established the National Coordinating Researchgroup of Rare Diseases.

The Researchgroup contributes to the Rare Disease Center as follows:

-defines indicators for the assessment of public health status

-organizes the system for national datacollection

-initiates the assemblage of clinical directives of „appropriate practice”

-initiates the development of E-health implementations on the field of rare diseases

-develops methods for the collection of national expertise

-coordinates the designation of expert centers

-participates in the development of quality control for diagnostic laboratories

-initiates various levels of training in aspect of rare diseases

-coordinates national research concerning rare diseases, assists international collaboration

-contributes to the improvement of access to special social services

-helps in developing possibilities of effective cooperation of patient organizations

-initiates the improvement of social perception of rare diseases