Social vulnerability and specificity of legal status of people suffering from rare diseases

Abstract

The end of the 20th and beginning of the 21st century marks the concept of protection of the rights of minority groups which emphasized the need for providing special additional protection of fundamental human rights and freedoms. Marginalization, stigmatization, social exclusion and vulnerability as a sociological characteristics and discrimination as a legal characteristic are interrelated, conditional and interdependent characteristics of minority groups. In this paper applying sociological and comparative methods we discussed about social status of persons suffering from rare diseases as a minority social group. We indicate vulnerability as the basic sociological characteristic and points out the need for establishing special legal status of persons suffering from rare diseases. Vulnerability can be understand as so-called 'positive labeling' in sociological context in order to exercise the basic social human rights of the minority groups. Special legal status for people suffering from rare diseases means the establishment of mechanisms for additional protection of social rights. Legal 'invisibility' causes social 'invisibility' and vice versa social invisibility is the legal 'invisibility'. It is therefore necessary systemic and interdisciplinary action to regulate and to improve the social and legal status of individuals suffering from rare diseases.

Keywords

• vulnerability
• discrimination
• social status
• legal status
• people suffering from rare diseases