摘要：Introduction. In the framework of the Joint Action for Rare Diseases (RD-ACTION),a specific task was defined to identify mechanisms influencing sustainability, equity andresilience of health systems for rare diseases (RDs).Method. Literature narrative review on health systems sustainability and resilience forRDs. Years: 2000-2015. Databases: PubMed, Scopus, EBSCOHost, EMBAL, PASCAL,EMBASE, STN International and GoogleScholar. Analysis: interpretive synthesisconcept and thematic analysis (Dixon-Wood, et al.).Results. 97 papers and 4 grey literature publications were identified. Two main topicsstand out: economic evaluation and networks. The first topic did not identify widely acceptedcriterion to assign more weight to individuals with greater health needs. Healthcarenetwork are identified as increasingly important for sustainability and resilience, inall of their aspects: professional “expertise”, “experience” networks of users and carers;policy, learning, and interest networks.Conclusion. Possible mechanisms for ensuring sustainability can be identified in networking,patients’ empowerment and reorienting healthcare towards integrated communityand home care.
关键词：health system;sustainability; health equity; rare diseases; networks
