*The English version of the policy recommendations has been published. (October 28, 2026)

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

For details, please see the PDF below.

Advisory Board Members (Titles Omitted; in Japanese syllabary order) *Affiliations and titles current at the time of participation

Hiroshi Oguro (President, Japan Patients Association)
Naoyuki Kitagawa (Director, Amanuma Kitagawa Clinic)
Junichi Nitta (Director General, Department of Health and Welfare, Nagasaki Prefecture)
Fumiaki Nonaka (Senior Assistant Professor, Department of Island and Community Medicine, Nagasaki University Graduate School of Biomedical Sciences)
Kayo Nomasa (Intractable Disease Medical Coordinator, Genetics Division, Osaka Intractable Disease Medical Information Center, Osaka General Medical Center, Osaka Prefectural Hospital Organization)
Hidehiro Mizusawa (Special Advisor to the President and President Emeritus, National Center of Neurology and Psychiatry / Director General, Genomic Medicine Japan (GeMJ))
Masaaki Yokota (Assistant Director-General, Health and Welfare Bureau, City of Chiba)
Saori Watanabe (Project Assistant Professor, Department of Public Policy, Institute of Medical Science, University of Tokyo)

These policy recommendations are based on discussions at meetings HGPI held for this project and have been compiled in HGPI’s capacity as an independent health policy think-tank. They do not, in any capacity, represent the opinions of any participating expert, speaker, related party, or organization to which those parties are affiliated.

[Policy Recommendations] Driving Progress in Intractable and Rare Disease Policy Through Patient and Public Voices: Towards Redesigning Healthcare Delivery Systems Across Diagnosis