
What We Mean when We Say … An Approach to Health Care and Welfare for Persons with Rare Diseases
Author(s)/Editors Marko Milenković, Isidora Jarić, Miloš Milenković Publisher Institute for Philosophy and Social Theory, University of Belgrade Institute for Democratic Engagement Southeast Europe, Belgrade Published 2023 ISBN 978-86-82324-36-2 Pages 16 Edition SquareThis text examines access to health care for patients suffering from rare diseases in Serbia, especially those living outside major urban centers. The focus of research is the introduction of a new entity in the healthcare system – The Center for Rare Diseases. Based on the analysis of the legal and strategic framework, as well as qualitative research, a number of problems in access to health care and welfare for people with rare diseases are presented in the text. The paper presents a set of recommendations for solving the problem of access to services for all citizens.