Zdravstveno zbrinjavanje osoba koje boluju od retkih bolesti – zakonodavne promene

Sjeničić, Marta and Milenković, Marko (2015) Zdravstveno zbrinjavanje osoba koje boluju od retkih bolesti – zakonodavne promene. Pravni život, 64 (9). pp. 395-408. ISSN 0350-0500

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Abstract

Legal solution of the problems of persons with rare diseases has been initiated and movements are already visible. Legal frame is established in the last few years related to diagnostics, but also treatment of rare diseases in Serbia and abroad. Existing solutions are, however, quite limiting. There is always an open issue whether the persons with rare diseases will really have access to the contemporary therapies which are available only abroad. It seems that the state goes forward with setting the financial sustainability of diagnostics and treatment of rare diseases, through foundation of Budgetary fund and finding the ways to finance it aside of regular resources collected through mandatory health insurance. However, the functioning of this Fund and procedures request certain alterations. After enacting the legal regulation, next step is setting such organisation of health system, which would enable referring of patients with rare diseases, without obstacles to the health levels which are in position to solve such problems. This is not primarily the issue of legal regulation, but the issue of practice of health institutions and health professionals and the issue of their education in this area.

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