Employment and Work Ability in Rare Diseases

This document is a systematic literature review that investigates employment and work ability in individuals living with rare diseases. The study aims to address the lack of microlevel evidence regarding the socioeconomic impact of rare diseases, particularly focusing on health selection effects. A comprehensive search was conducted across three electronic databases from 2013 to 2023, identifying 44 studies that met the inclusion criteria. The findings indicate that individuals with rare diseases are less likely to be employed compared to control groups, with 68% of studies reporting higher unemployment rates among these individuals. Additionally, 87% of studies noted that those with rare diseases are more likely to experience work disability. The review also highlights that 90% of studies reported increased missed work time for individuals with rare diseases. The results underscore the need for further research to understand the implications of these findings on policy-making and healthcare practices.