20.500.12556/DKUM-73389 Nujnost pravne ureditve redkih bolezni diplomsko delo Legal regulation necessity of rare diseases V diplomskem delu je obravnavana problematika redkih bolezni, bolezni, za katerimi zboli majhen del prebivalstva. Čeprav se Evropska unija in države članice trudijo izboljšati položaj pacientov z redkimi boleznimi, so ti še vedno v zapostavljenem položaju. Glavni razlog je v pomanjkljivi pravni ureditvi področja redkih bolezni, pa tudi v omejenih pristojnostih Evropske unije na področju javnega zdravja. Pozitivno ukrepanje držav članic in Evropske unije je na tem področju potrebno, da se pacientom z redkimi boleznimi zagotovi pravica do zdravja in enaka obravnava v primerjavi s pacienti s pogostejšimi boleznimi. Pacienti z redkimi boleznimi se soočajo s številnimi težavami pri diagnosticiranju, zdravljenju in oskrbi, kar se odraža na njihovi kakovosti življenja in življenja njihovih bližnjih. Pacienti z redkimi boleznimi so tako podvrženi več vidikom diskriminacije, predvsem pri zdravstvenem varstvu, socialnem življenju ter izobraževalnih in poklicnih možnostih. Zaradi majhnega števila ljudi, ki zbolijo za posamezno redko boleznijo, in pomanjkanja strokovnega znanja o redkih boleznih, je sodelovanje med državami članicami Evropske unije nujno. Tako so za paciente z redkimi boleznimi pomembne evropske referenčne mreže in čezmejno zdravstveno varstvo. Za diagnosticiranje, zdravljenje in preprečevanje redkih bolezni se uporabljajo zdravila sirote, ki so običajno veliko dražja kot preostala zdravila. Pogosto se zato pojavijo težave pri povračilu stroškov zdravljenja pacientov z redkimi boleznimi. Ustrezno in primerno zdravstveno varstvo v državi zdravstvenega zavarovanja pacienta ni vedno na voljo, zato se pacientom z redkimi boleznimi omogoča uporaba zdravstvenih storitev v drugi državi članici. The thesis discusses the issue of rare diseases, diseases affecting only a small portion of the population. Although the European Union and its Member States are trying to improve the position of patients with rare diseases, they are still in a disadvantaged position. The main reason for this is insufficient legal regulation of the field of rare diseases in addition to limited jurisdiction of the European Union in the field of public health. Positive measures of Member States and the European Union in this field are needed in order to assure patients with rare diseases their right to health and equal treatment to that provided to patients with more common diseases. Patients with rare diseases are facing numerous problems in terms of diagnostics, treatment and care, which is reflecting on the quality of life of these patients and their close ones. Patients with rare diseases are thus subjected to more types of discrimination, particularly in terms of healthcare, social life and education and career possibilities. Cooperation between Member States of the European Union is crucial due to a low number of people, suffering from a rare disease, and a lack of professional knowledge on rare diseases. European reference networks and cross-border healthcare are important for patients with rare diseases. Orphan medicinal products are used for the diagnosing, treatment and prevention of rare diseases. These are usually much more costly than other medicines, which is why the compensation of costs for treatment of patients with rare diseases is often connected with problems. Adequate and appropriate healthcare is not always available in the State of the patient's health insurance, which is why patients with rare diseases are allowed to use health services in other Member States. pacienti z redkimi boleznimi zdravila sirote pravica do zdravja diskriminacija čezmejno zdravstveno varstvo načelo enakosti. patients with rare diseases orphan medicinal products right to health discrimination cross-border healthcare principle of equal treatment. true true false [A. Breg] Slovenski jezik Angleški jezik Diplomsko delo/naloga 2019-04-04 10:18:18 2019-04-24 11:46:44 2022-08-02 00:40:31 2019-08-06 03:29:14 2019 0 Maribor 0 Maribor 39 f. 0000-00-00 NiDoloceno NiDoloceno NiDoloceno 0000-00-00 0000-00-00 0000-00-00 342.7:004.738.5(043.2) 5730091 URN:SI:UM:DK:ZKTFFDEI UN_Breg_Aleksandra_2019.pdf UN_Breg_Aleksandra_2019.pdf 1 9ACBD0C0C17EED62A1393EC8E4A36B66 b75b3888b2b724efb9dcb962a9d69cdd6cd5ca182a4de782e534724687880cdc a9708127-7c10-11eb-bb7a-00155d0001ca 20.500.12556/dkum/ba524bc6-2ed5-46c9-950d-175427d19bdf https://dk.um.si/Dokument.php?lang=slv&id=133429 Pravna fakulteta 0 0 0