Health and Global Policy Institute (HGPI) will host a seminar for Japan’s Patient Expert Platform (J-PEP) members. Established on December 1, 2024, J-PEP is a platform for information and exchange that supports the sustainable and meaningful involvement for a diversity of people with lived experience of health concerns and other related parties in the policy-making process.

To learn more about J-PEP, an introductory video and reference materials found here. (Please note that these materials are available in Japanese only.)

The intent of J-PEP Seminars is to create an environment for participatory learning and exchange that transcends the boundaries of various diseases and fields to provide people with lived experience, others affected by health concerns, and citizens who are interested in participating in the policy-making process with opportunities to connect, engage in mutual learning, and share opinions. Consequently, this J-PEP Seminar will provide a place for people with lived experience of health concerns and who are interested in involvement in the health policy-making process to teach each other and help each other acquire the basic knowledge needed to take part in that process.

At this seminar, we aim to help deepen connections among people registered at J-PEP and to form a network in which people who have recently taken an interest in involvement in the policy-making process can interact with people who possess such experience. It will also provide participants with the opportunity to consider issues and options in health policy from the perspectives of people with lived experience of health concerns and other affected parties in a manner that cuts across health conditions and areas.

For the third seminar, we are pleased to welcome Mr. Takayuki Shigemitsu (President, Ryouiku World/Fellow, Institute for Healthcare and Long Term Solutions, Tama University Graduate School/Researcher, St. Marianna University School of Medicine). Mr. Shigemitsu has coined the term “RD Workers”—a term to describe people with intractable diseases who are working or wish to work—and has dedicated his efforts to expanding employment and social participation options for people living with such conditions. “RD Worker” is an abbreviation of “Rare Disease Worker.” While “Rare Disease” typically refers to rare conditions, the concept of RD Workers as defined by Ryouiku World encompasses not only those that are designated as intractable diseases but also people with a broad range of intractable chronic conditions.

In this seminar, Mr. Shigemitsu will share practical examples of policy advocacy in the field of intractable diseases and employment, including the development of the “White Paper on Social Participation of Persons with Intractable Diseases,” efforts to expand employment opportunities for people with disabilities through engagement with local governments, and the implementation of flexible work arrangements within the framework of the public service acts.

To participate in this seminar, J-PEP membership registration is required.

(Registration is free, but please note that J-PEP is available only in Japanese.)

[How to Register]

1. If you are not yet a member, please register for J-PEP.
2. After completing registration, please log in.
3. Once logged in, please complete your seminar registration here.
   (Available only in Japanese.)

[Event Overview]

• Speaker: Mr. Takayuki Shigemitsu (President, Ryouiku World/Fellow, Institute for Healthcare and Long Term Solutions, Tama University Graduate School/Researcher, St. Marianna University School of Medicine)
• Date & Time: Wednesday, July 22, 2026, 18:00-19:00 JST
• Format: Online (Zoom webinar)
• Language: Japanese
• Participation Fee: Free
• Capacity: 500 participants
• Target audience: Participation will be limited to members of J-PEP (people with lived experience of health concerns, their family members and supporters, and citizens)

■ Profile:

Takayuki Shigemitsu (President, Ryouiku World/Fellow, Institute for Healthcare and Long Term Solutions, Tama University Graduate School/Researcher, St. Marianna University School of Medicine)
Mr. Shigemistu was diagnosed with cerebrospinal fluid hypovolemia in his mid-twenties. After leaving two jobs and spending five years bedridden, he is currently taking part in a social experiment in flexibly scheduled work arrangements. His primary symptom is chronic pain 24 hours a day, 365 days a year; the stress of living with persistent pain has, he notes, contributed to alopecia areata and a tendency toward impatience. Co-author: “語りの場からの学問創成 [Creating Scholarship from Spaces of Narrative]” (Kyoto University Press, March 31, 2024)