{"?xml":{"@version":"1.0"},"edm:RDF":{"@xmlns:dc":"http://purl.org/dc/elements/1.1/","@xmlns:edm":"http://www.europeana.eu/schemas/edm/","@xmlns:wgs84_pos":"http://www.w3.org/2003/01/geo/wgs84_pos","@xmlns:foaf":"http://xmlns.com/foaf/0.1/","@xmlns:rdaGr2":"http://rdvocab.info/ElementsGr2","@xmlns:oai":"http://www.openarchives.org/OAI/2.0/","@xmlns:owl":"http://www.w3.org/2002/07/owl#","@xmlns:rdf":"http://www.w3.org/1999/02/22-rdf-syntax-ns#","@xmlns:ore":"http://www.openarchives.org/ore/terms/","@xmlns:skos":"http://www.w3.org/2004/02/skos/core#","@xmlns:dcterms":"http://purl.org/dc/terms/","edm:WebResource":[{"@rdf:about":"http://www.dlib.si/stream/URN:NBN:SI:doc-IMJV14PB/5d4098c9-e2b1-4256-a477-356c5fa9b77e/PDF","dcterms:extent":"319 KB"},{"@rdf:about":"http://www.dlib.si/stream/URN:NBN:SI:doc-IMJV14PB/94754e6d-d4a9-4d04-9aa2-6c2f22c6e1aa/TEXT","dcterms:extent":"41 KB"}],"edm:TimeSpan":{"@rdf:about":"2005-2025","edm:begin":{"@xml:lang":"en","#text":"2005"},"edm:end":{"@xml:lang":"en","#text":"2025"}},"edm:ProvidedCHO":{"@rdf:about":"URN:NBN:SI:doc-IMJV14PB","dcterms:isPartOf":[{"@rdf:resource":"https://www.dlib.si/details/URN:NBN:SI:spr-8ER5ZBJN"},{"@xml:lang":"sl","#text":"Farmacevtski vestnik"}],"dcterms:issued":"2016","dc:creator":["Čačilo, Tina","Detiček, Andreja","Janžič, Andrej","Kos, Mitja","Locatelli, Igor"],"dc:format":[{"@xml:lang":"sl","#text":"številka:2/3"},{"@xml:lang":"sl","#text":"letnik:67"},{"@xml:lang":"sl","#text":"str. 200-212"}],"dc:identifier":["ISSN:0014-8229","COBISSID:4082033","URN:URN:NBN:SI:doc-IMJV14PB"],"dc:language":"sl","dc:publisher":{"@xml:lang":"sl","#text":"Slovensko farmacevtsko društvo"},"dc:subject":[{"@xml:lang":"sl","#text":"Bolezni"},{"@xml:lang":"en","#text":"disease"},{"@xml:lang":"sl","#text":"razpoložljivost zdravil"},{"@xml:lang":"sl","#text":"redke bolezni"},{"@xml:lang":"sl","#text":"umeščanje zdravil"},{"@rdf:resource":"http://www.wikidata.org/entity/Q929833"}],"dcterms:temporal":{"@rdf:resource":"2005-2025"},"dc:title":{"@xml:lang":"sl","#text":"Razpoložljivost zdravil za zdravljenje redkih bolezni v Sloveniji| Availability of medicines for rare diseases in Slovenia|"},"dc:description":[{"@xml:lang":"sl","#text":"Rare diseases affect not more than 5 in 10 000 people in Europe and altogether between 6 - 8 % of the European population. Comparing to the number of rare diseases known, medicines for rare diseases are only few. Incorporating them into a healthcare system is difficult since they are costly and their effectiveness is based on clinical trials that include small numbers of patients. Due to the differences in healthcare systems their number and the time to their first use differ between the countries. In Slovenia, we have a high number of these medicines (68 out of 125 medicines) and tri quarters of them are also fully or partially reimbursed. However, the median time to first use is more than a year. In the future the number of medicines for rare diseases will rise and the countries will face a greater challenge in deciding which medicines they could afford"},{"@xml:lang":"sl","#text":"V evropskem prostoru veljajo za redke bolezni tiste, ki prizadenejo največ 5 na 10 000 oseb, skupno pa med 6 -8 % evropskega prebivalstva. Zdravil za zdravljenje redkih bolezni je v primerjavi s številom bolezni majhno. Njihovo umeščanje v zdravstveni sistem je oteženo, ker so običajno zelo draga, dokaze o njihovi učinkovitosti pa predstavljajo klinične študije, narejene na majhnem številu bolnikov. Zaradi različnih politik zdravstvenih sistemov držav se število razpoložljivih zdravil za zdravljenje redkih bolezni in čas do njihove prve uporabe med državami razlikuje. V Sloveniji imamo na voljo sorazmerno veliko število teh zdravil (68 od 125 zdravil) in tri četrtine teh je delno ali popolnoma kritih iz naslova obveznega zdravstvenega zavarovanja. Po drugi strani mediana njihove prve uporabe pri nas znaša dobro leto. V prihodnosti bo število zdravil za zdravljenje redkih bolezni naraslo, države pa bodo pred še težjo nalogo sprejemanja odločitev, katera zdravila si bodo lahko privoščila"}],"edm:type":"TEXT","dc:type":[{"@xml:lang":"sl","#text":"znanstveno časopisje"},{"@xml:lang":"en","#text":"journals"},{"@rdf:resource":"http://www.wikidata.org/entity/Q361785"}]},"ore:Aggregation":{"@rdf:about":"http://www.dlib.si/?URN=URN:NBN:SI:doc-IMJV14PB","edm:aggregatedCHO":{"@rdf:resource":"URN:NBN:SI:doc-IMJV14PB"},"edm:isShownBy":{"@rdf:resource":"http://www.dlib.si/stream/URN:NBN:SI:doc-IMJV14PB/5d4098c9-e2b1-4256-a477-356c5fa9b77e/PDF"},"edm:rights":{"@rdf:resource":"http://rightsstatements.org/vocab/InC/1.0/"},"edm:provider":"Slovenian National E-content Aggregator","edm:intermediateProvider":{"@xml:lang":"en","#text":"National and University Library of Slovenia"},"edm:dataProvider":{"@xml:lang":"sl","#text":"Slovensko farmacevtsko društvo"},"edm:object":{"@rdf:resource":"http://www.dlib.si/streamdb/URN:NBN:SI:doc-IMJV14PB/maxi/edm"},"edm:isShownAt":{"@rdf:resource":"http://www.dlib.si/details/URN:NBN:SI:doc-IMJV14PB"}}}}