Health and Global Policy Institute (HGPI) presented a poster titled “Policy Recommendations Based on Patient and Public Voices: Healthcare Delivery Systems for Intractable and Rare Diseases” at the 14th Annual Meeting of the Japanese Society of Medical Networking for Intractable Diseases.

The presentation began with an overview of the current state of healthcare policy for intractable and rare diseases. The team then introduced challenges identified through individual interviews with patients, others with lived experience, healthcare professionals, and local government officials, organized by each stage across healthcare delivery, from when patients first notice physical or mental discomfort to when they are receiving ongoing healthcare in the community. Following this, the team presented the policy recommendations “Driving Progress in Intractable and Rare Disease Policy Through Patient and Public Voices: Towards Redesigning Healthcare Delivery Systems Across Diagnosis,” compiled by HGPI based on discussions with experts representing industry, government, academia, and civil society.