GLOBAL PERSPECTIVES ON RARE DISEASE CENTERS: What We Learned from Case Studies
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.
Rare Diseases, rare disease care, Organizational Case Studies, Global Health, rare diseases centres
Rare Diseases, rare disease care, Organizational Case Studies, Global Health, rare diseases centres
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