20.500.12556/DiRROS-29772 Pravica do zdravljenja redkih bolezni v Sloveniji The right to treatment of rare diseases in Slovenia V začetku letošnjega leta je Državni zbor sprejel Zakon o Skladu za financiranje zdravljenja redkih bolezni (ZSFZRB), namenjen vzpostavitvi sistemskega in namenskega vira financiranja zdravljenja redkih bolezni, ki praviloma prizadenejo otroke. To naredi razpravo o pravici do zdravljenja redkih bolezni, pogosto zvezano z ekonomsko nedostopnostjo ali (ne)obstojem učinkovitega zdravila, občutljivo, saj otroci predstavljajo ranljivo skupino prebivalstva, na intuitivni ravni pa še ne živeto ali neizpolnjeno življenje pogosto šteje več kot že živeto ali izpolnjeno življenje. Prispevek ob ustavni pravici do zdravstvenega varstva in temeljih obveznega zdravstvenega zavarovanja obravnava splošno ureditev zdravljenja redkih bolezni v Sloveniji, vključno s pravico do zdravljenja v tujini in pravico oziroma dostopom do zdravil, ter posebnosti, ki jih v slovenski pravni red prinaša ZSFZRB. At the beginning of this year, the Parliament adopted the Act on the Fund for the Financing of the Treatment of Rare Diseases (ZSFZRB), intended to establish a systemic, earmarked source of funding for the treatment of rare diseases, which generally affect children. This makes the debate on the right to treatment of rare diseases - often linked to economic inaccessibility or the (non)existence of effective medication - particularly sensitive, as children represent a vulnerable group of the population. Additionally, a life not yet lived or not yet fulfilled is often considered more valuable than one already lived or fulfilled on an intuitive level. The paper, based on the constitutional right to healthcare and the foundations of compulsory health insurance, addresses the general regulation of the treatment of rare diseases in Slovenia, including the right to treatment abroad and the right or access to medicines, as well as the specific features introduced into the Slovenian legal system by the ZSFZRB. pravica do zdravstvenega varstva pravica do zdravljenja pravica do zdravljenja v tujini zdravila redke bolezni obvezno zdravstveno zavarovanje right to healthcare right to healthcare abroad medication rare disease compulsory health insurance true true true Slovenski jezik Angleški jezik Neznano 2026-06-05 09:08:10 2026-06-05 09:08:11 2026-06-08 09:40:53 0000-00-00 00:00:00 2026 0 0 str. 151-170 [št.] 2/3 Letn. 26 2026 0000-00-00 Zaloznikova Objavljeno NiDoloceno 0000-00-00 0000-00-00 2026-06-01 342.7:616:614.2 1580-6316 279809795 RAZ_Misic_Luka_2026.pdf RAZ_Misic_Luka_2026.pdf 1 3E7295FDCC1698CF2EAF0705A3E5B96D 9374c2ff6210ec02cc3603bee64aaad05ce80c9675288e28130ee93baaa1d8e3 b83ebc36-60b1-11f1-9215-001a4af901a5 https://dirros.openscience.si/Dokument.php?lang=slv&id=44768 Inštitut za delo pri Pravni fakulteti v Ljubljani 0 0 0