Authors: Nicolas Bougas, Terhi Kangas, Katrien Vanthomme, Jose Joaquín Mira Solves, Gaël Brulé, Helene Mellerio, Hadewijch Vandenheede & Agnes Dumas
Journal: Orphanet Journal of Rare Diseases • 2025
Overview
This systematic literature review synthesizes evidence from 44 studies examining how rare diseases affect employment and work ability.
Key findings
People with rare diseases faced greater challenges in employment than people without a rare disease: individuals with rare diseases were less likely to be employed or more likely to be unemployed in 68% of the studies and 87% of the studies reported that individuals with rare diseases were more likely to be unable to work because of their health. Regarding work ability, 90% of the studies reported more missed work time, and more perceived impairment at work was found in 100% of the studies.
These findings highlight the need for targeted interventions and policies that support work participation among individuals with rare diseases.