Name and Surname
Marko Milenković
Affiliation
Institute of Social Sciences, Belgrade
Contact email
mmilenkovic@idn.org.rs
Short Biography
Dr. Marko Milenković, senior research associate at the Institute of Social Sciences and external associate of the Center for Constitutional Studies and Democratic Development School of Advanced International Studies, in Bologna. Program Secretary of the Association of Lawyers for Medical and Health Law of Serbia SUPRAM. His main areas of interest are EU Law, European Integration, Administrative Law, Environmental Law and Health Law.
More information at: https://idn.org.rs/sr_lat/centar-za-pravna-istrazivanja/
Research abstract
Starting from the principle that the attitude towards vulnerable groups and minorities defines the level of development of a society and its readiness to facilitate the unhindered realization of the rights of every person, we dedicate this project to a particularly vulnerable group – people living with rare diseases and their families. The research directly responds to the challenges of decentralization (“Developing fair models of state decentralization”) of the health system and the related social protection system. People suffering from rare diseases and their family members, in most of the territory of the Republic of Serbia, do not have access to resources to meet their needs and exercise their rights, especially those related to health services of diagnosis, treatment and rehabilitation. This greatly affects the deterioration of the social position of both patients and their families. During the preliminary research, we discovered that – despite the observed efforts of some institutions, as well as the significantly increased media attention – this target group faces the impossibility of applying legal provisions in practice, unclear wording within the reference by-laws, due to which they are denied certain rights and services, such as and significant restriction of access to health and social care services during the COVID-19 pandemic. The goal of this research is to, through a combination of field, theoretical and public work, reveal the way in which the existing – nominally otherwise significantly improved – legal and institutional framework can be made functional. Empirical research will be conducted, with the aim of providing a set of research-based proposals for the improvement of public policies to decision-makers and implementers in relevant institutions. We will focus on finding a way to decentralize the system, while maintaining the necessary level of expertise required by these diseases. Dr. Marko Milenković realizes the project in cooperation with prof. Isidorom Jarić, Ph.D. and Prof. Dr. Miloš Milenkovic from the Faculty of Philosophy, University of Belgrade.