Health and Global Policy Institute (HGPI) will hold an Intractable Disease Day Symposium: Future Measures for Intractable Diseases from the Perspectives of Patients and Citizens on 23rd May.

Although health policy spans a wide variety of topics, intractable diseases are one of the most important. While they are often discussed alongside rare diseases, certain aspects of intractable diseases place particularly heavy physical and psychological burdens on patients. We have yet to identify the underlying mechanisms or establish clear treatment methods for intractable diseases. They also require patients to undergo long-term treatment. Japan currently designates 341 conditions as “intractable diseases” and they are estimated to affect over 1 million people.

Starting the compilation of the “Outline of Intractable Disease Measures” in 1972, the Government of Japan has been advancing measures for intractable diseases through the promotion of R&D, improving the healthcare provision system, and supporting patients, mainly through the subsidization of care. After the formation of the Liaison Council for Intractable Disease Treatment and establishment of Intractable Disease Support Centers in each prefecture in 1998, joint efforts with the welfare system have been underway to improve living environments and provide employment support for people living with intractable diseases. The Long-Term Care Insurance System has made it possible to provide long-term care to people who require it due to an intractable disease, and a direction for intractable disease measures that include promoting healthcare and improving the social environment was set by the enactment of the Act on Medical Care for Patients with Intractable Diseases in 2014.

However, measures for intractable diseases face a number of lingering issues. For the healthcare provision system, these include information disparities, in which people do not receive enough of the information they need; long diagnostic delays or diagnosis lag; regional healthcare disparities; and collaboration spanning pediatric healthcare to adult healthcare. There are also a number of actions that should be taken for R&D. For example, we hope to see the establishment of a data aggregation system to further basic research on each disease as well as the promotion of Patient and Public Involvement (PPI) to encourage research that reflects patients’ needs in the development of therapeutics.

At this symposium, we will hold a multi-stakeholder discussion on the nature of intractable disease control to identify issues to address in the future and disseminate those issues to greater society.

[Event Overview]

• Date & Time: Thursday, May 23, 2024; from 15:00 to 17:00 (Open 14:45) JST
• Format: Hybrid (In-Person and Online (Zoom Webinars)); the lecture archive will be available at a later date (Please register for webinar if you would like to watch archive)
• Venue: Global Business Hub Tokyo Field  >>Access
  (Grand Cube 3F, Otemachi Financial City, 1-9-2, Otemachi, Chiyoda-ku, Tokyo, JAPAN 100-0004)
• Language: Japanese and English (with simultaneous interpretation)
• Participation Fee: Free
• Capacity: Venue about 50 /Online 1,000
• Organizer: Health and Global Policy Institute (HGPI)
• Supported by: Japan Patients Association (JPA); NPO ASrid

*Registration in In-Person will close at 12:00, May 17. Participants will be selected by lot and will be informed of the result on May 20. We appreciate your understanding.
**After your registration is completed, a confirmation e-mail will be sent automatically to your e-mail address. If you do not receive it, please send us an e-mail at info@hgpi.org.

[Program] (titles omitted)