The article "Employment and work ability in individuals living with rare diseases: a systematic literature review" by, among others, Terhi Kangas, Katrien Vanthomme and Hadewijch Vandenheede, was published in the Orphanet Journal of Rare Diseases.was published in the Orphanet Journal of Rare Diseases. Full text is available here.
The study provides a comprehensive overview of how rare diseases affect individuals’ ability to work and maintain employment — a crucial yet often overlooked dimension of health-related social inequality. Based on an analysis of 44 studies covering 34 different rare diseases, the review reveals that individuals living with rare diseases are significantly more likely to be unemployed or work-disabled compared to matched control groups. Moreover, most studies report higher levels of missed work time and perceived impairment at work among these individuals. Despite these consistent patterns, the authors emphasize that methodological limitations in existing research — particularly a lack of well-matched control groups — continue to hinder a full understanding of health selection effects. The findings call for stronger, more targeted research as well as policy interventions that address the structural barriers faced by people with rare diseases in the labour market.
Citation: Bougas, N., Kangas, T., Vanthomme, K. et al. Employment and work ability in individuals living with rare diseases: a systematic literature review. Orphanet J Rare Dis 20, 193 (2025). https://doi.org/10.1186/s13023-025-03691-7
