Health and Global Policy Institute (HGPI) has presented policy recommendations titled, “Driving Progress in Intractable and Rare Disease Policy Through Patient and Public Voices: Towards Redesigning Healthcare Delivery Systems Across Diagnosis.”

Over the course of our activities aiming to increase societal interest and drive more effective, organic measures for intractable and rare diseases, HGPI has worked to identify desirable medium- and long-term directions to guide society’s progress in intractable and rare disease policy.

Focusing our attention on the healthcare delivery system for intractable and rare diseases, these recommendations delve into each stage across healthcare delivery, from when patients and other people living with intractable and rare diseases first notice physical or mental discomfort to when they are receiving ongoing healthcare in the community. Through desk research, individual interviews with patients, others with lived experience, and other related parties, as well as discussions with experts representing industry, government, academia, and civil society, we have examined the current state of the healthcare delivery system from the perspectives of patients and the public and have highlighted noteworthy initiatives from prefectural governments.

Our findings were then synthesized into the following four recommendations that aim to achieve a society where patients and other people living with intractable and rare diseases can receive healthcare throughout the life course with peace of mind, while living true to themselves.

Recommendation 1: Position intractable and rare diseases as an issue for society as a whole and spur progress in relevant policies through joint collaboration that involves action with patients, others with lived experience, and the public

Recommendation 2: Build a healthcare delivery system with smooth connections from primary care clinics to specialized medical facilities that provides patients and other people living with intractable and rare diseases with appropriate care from early stages on

Recommendation 3: Reinforce local systems for collaboration to ensure patients and other people living with intractable and rare diseases can receive reliable, continuous care

Recommendation 4: Develop consultation support systems that guarantee patients and other people living with intractable and rare diseases get the support they need, regardless of where they live or whether they have a diagnosis

*The English announcement will be presented as soon as the translation is complete.