From Rights to Practice: Interdisciplinary Insights into Healthcare Access and Patient Involvement in Rare Disease Governance in Serbia

Milenković, Marko and Jarić, Isidora and Sjeničić, Marta and Milenković, Miloš (2026) From Rights to Practice: Interdisciplinary Insights into Healthcare Access and Patient Involvement in Rare Disease Governance in Serbia. In: Book of Abstracts: 10th EAHL Conference, Uppsala 2026. Uppsala University, Uppsala, pp. 65-66.

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Abstract

This paper presents preliminary findings from an ongoing interdisciplinary research project examining access to healthcare and patient involvement in decision-making for people living with rare diseases (PLWRD) in Serbia. Positioned at the intersection of health law, sociology, and anthropology, the study seeks to explore how formal legal guarantees are translated into practice and to identify the structural, institutional, and socio-cultural factors shaping this process. The paper draws on a multi-method research design combining legal and policy analysis with qualitative empirical research. The legal component examines the existing regulatory framework governing access to healthcare and patient rights, including relevant national legislation, strategic documents, and alignment with European standards. This is complemented by qualitative fieldwork, including focus groups with patients, semi-structured interviews with patient organisations and policymakers

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