Report Intractable & Rare Diseases

About Intractable & Rare Diseases

Efforts for intractable disease control have been advancing since the formulation of the “Outline of Intractable Disease Measures” in 1974 and were expanded to include promoting healthcare and improving the environment with the enactment of the Act on Medical Care for Patients with Intractable Diseases in 2014. 2024 signifies a 10-year milestone since the law on intractable disease was enacted and expectations are high for deeper multi-stakeholder collaboration on policies for people with intractable diseases and other affected parties.

By capturing issues facing intractable disease control from the perspectives of those most affected, this project aims to present policy options for issues spanning topics from research and development to lingering issues that broadly affect daily life, such as the information gap, long wait times for diagnosis, and regional disparities.

[Upcoming Event] Innovation for NEW HOPE Symposium – Bringing hope to Newborns and Children: Genomic Testing and Advanced Therapies for Hereditary Intractable and Rare Diseases (December 16, 2025)
2025-11-27

[Upcoming Event] Innovation for NEW HOPE Symposium – Bringing hope to Newborns and Child ...>>

[In the Media] “Medical Renaissance: Understanding Rare Diseases (Part 5) – Early Diagnosis: Easing Anxiety and Doubts” (The Yomiuri Shimbun, October 10, 2025)
2025-10-20

[In the Media] “Medical Renaissance: Understanding Rare Diseases (Part 5) – Early ...>>

[Public Comment Submission] Intractable & Rare Diseases Project “Basic Plan for Genomic Medicine Policies (Draft)” (August 1, 2025)
2025-08-20

[Public Comment Submission] Intractable & Rare Diseases Project “Basic Plan for Geno ...>>

[Event Report] The 130th HGPI Seminar “Marking a Decade of the Act on Medical Care for Patients With Intractable Diseases: Connecting Intractable Diseases and Society From the Perspective of a Media Professional and Family Member” (January 28, 2025)
2025-04-30

[Event Report] The 130th HGPI Seminar “Marking a Decade of the Act on Medical Care for P ...>>

[Discussion Points] Intractable & Rare Diseases Project Discussion Paper “Intractable & Rare Diseases 2025: 10 Years After the Passing of the Intractable Diseases Act, Toward a Co-created Future” (March 28, 2025)
2025-04-11

[Discussion Points] Intractable & Rare Diseases Project Discussion Paper “Intractabl ...>>

[Upcoming Event] Innovation for NEW HOPE Symposium titled advancing diagnosis and treatment for Intractable Diseases: Building a Supportive Community for All (November 20, 2024)
2024-10-31

[Upcoming Event] Innovation for NEW HOPE Symposium titled advancing diagnosis and treatm ...>>

[Event Report] Intractable Disease Day Symposium: Future Measures for Intractable Diseases from the Perspectives of Patients and Citizens (May, 23 2024)
2024-08-23

[Event Report] Intractable Disease Day Symposium: Future Measures for Intractable Diseas ...>>

[In the Media] 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)
2024-06-04

[In the Media] Symposium Held To Mark Tenth Anniversary of Act on Medical Care for Patie ...>>

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