GLOBAL PERSPECTIVES ON RARE DISEASE CENTERS: What We Learned from Case Studies

This report, conducted by Rare Diseases International (RDI), presents insights from a qualitative case study project exploring eight rare disease centers across diverse global contexts. Through semi-structured interviews, it examines how centers are organized, deliver care, engage patients, and collaborate within their health systems.
The findings highlight a wide range of models shaped by local resources, policies, and system constraints.
Common challenges and enabling factors are identified, alongside innovative practices that support more coordinated and patient-centered care.
These case studies aim to inform policy, strengthen collaboration, and support the development of more equitable rare disease care globally.