On May 13, 2026, Health and Global Policy Institute (HGPI) hosted an advisory board meeting titled “New Developments in Intractable and Rare Disease Policy from a Life-Course Approach: Perspectives of Patients, Affected Individuals, and Citizens.”

HGPI launched the “Intractable and Rare Disease Policy Project” to raise social awareness and promote more effective and coordinated measures for intractable and rare diseases. In 2024, marking the 10th anniversary of the enforcement of the Act on Medical Care for Patients with Intractable Diseases (Intractable Diseases Act), we reviewed past policies on intractable and rare diseases and compiled the medium- to long-term directions society should aim for in a discussion paper titled “Intractable and Rare Diseases 2025: 10 Years After the Passing of the Intractable Diseases Act, Toward a Co-Created Future.” For the 2025-2026 period, building upon the overall landscape of domestic policies, we are taking a step further to focus on developing a healthcare system that can alleviate the anxieties of patients and affected individuals in the field of intractable and rare diseases.

In this meeting, taking into account structural constraints such as the uneven distribution of medical resources and specialized knowledge, discussions focused on the initial stages of the healthcare provision system (before and after diagnosis) to explore challenges and solutions for ensuring that patients and affected individuals are reliably connected to the necessary medical care. Specifically, discussions were held with stakeholders from industry, government, academia, and civil society regarding three phases: from noticing an abnormality to visiting a clinic, from the first clinic visit to connecting with a specialized medical institution, and from visiting a specialized medical institution to finding a primary care physician.

[Event Overview]

• Date & Time: Wednesday, May 13, 2026, 15:00-17:00 JST
• Format: Hybrid *This meeting was held as a closed session.
• Venue: Seminar Room 403, West Wing 4th Floor, International House of Japan
• Language: Japanese
• Host: Health and Global Policy Institute (HGPI)

 

[Program] (titles omitted, in no particular order)

15:00-15:05 Opening Remarks

Yui Kohno (Manager, Health and Global Policy Institute)

15:05-15:15 Presentation 1 “Intractable and Rare Disease Policy in Japan”

Hidehiro Mizusawa (Special Advisor to the President and President Emeritus, National Center of Neurology and Psychiatry/ Director General, Genomic Medicine Japan (GeMJ))

15:15-15:25 Presentation 2 “Expectations for Japan’s Intractable and Rare Disease Policy from the Perspective of Patients and Affected Individuals”

Hiroshi Oguro (President, Japan Patients Association)

15:25-16:50 Discussion

Participants:
Hiroshi Oguro (President, Japan Patients Association) 
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 (Research Fellow, Department of Public Policy Institute of Medical Science, University of Tokyo)

Moderator:
Yui Kohno (Manager, Health and Global Policy Institute)

Observer:
Hironosuke Watanabe (Deputy Director, Intractable Disease Control Division, Public Health Bureau, Ministry of Health, Labour and Welfare (MHLW))

16:50-17:00 Summarizing and Closing

 

■ Advisory Board Members (Titles omitted, in Japanese alphabetical order)

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 (Research Fellow, Department of Public Policy Institute of Medical Science, University of Tokyo)

Moderator:
Yui Kohno (Manager, Health and Global Policy Institute)