Labour rights of the rare diseases population ‒ breaking the glass ceiling

Abstract

This paper aims to introduce a legal framework for exercising one of the most basic socio-economic rights of people with rare diseases: the right to decent work. Considering the specificity of the medical and, consequently, social status of the people affected, the appropriate labour-law measures need to be determined. Applying the comparative and normative method along with the contemporary anti-discrimination principle, the labour status of the rare diseases population has been analysed based on the proposed classification in legal terms. As a precondition for labour legislation, new Serbian healthcare legislation on rare diseases should be supported through the process of implementation to reduce adverse cases as effectively as possible, advance genetic and other clinical diagnoses, and thus increase the efficiency of available medical treatment. Concerning public health policy, updated registries and better health statistics should be created. These activities require certain amendments to both general and specialist labour legislation (disability legislation), aiming to include patients with rare diseases in the working (and social) environment without discrimination.