As part of the Health and Global Policy Institute (HGPI) Intractable Disease Control Project, a symposium titled “Future Measures for Intractable Diseases from the Perspectives of Patients and Citizens” was held on May 23, 2024, which was Intractable Disease Day. A report on the event has been published by the media.

This symposium, which marked the tenth anniversary of the enactment of the Act on Medical Care for Patients with Intractable Diseases, was held to identify items to consider in the future through multi-stakeholder discussions on the nature of intractable disease control as outlined by that act, and to broadly disseminate those discussion points to the public.

The article touches upon the importance of reflecting patients’ opinions in measures for intractable diseases and of conducting research in a manner that is centered on patients.

Please visit the link to view the full article (in Japanese only):
Symposium Held To Mark Tenth Anniversary of Act on Medical Care for Patients with Intractable Diseases, Opinions Exchanged on Accelerating Development of Treatments (NHK, May 23, 2024)