This report examines the current state of rare disease management in the Asia-Pacific region, highlighting the growing recognition of rare diseases as a priority policy issue. The report provides an overview of the challenges and opportunities in the region, including the lack of a unified definition of rare diseases, the difficulty in diagnosing rare diseases, and the limited availability of effective treatments. The report also identifies three key priority areas for action: improving diagnostic accuracy, increasing access to effective treatments, and promoting patient-centered care. The report is based on a survey of over 500 healthcare professionals, 16 academics, government officials, and patient advocates from the region.
