We are conducting a survey on the High-Cost Medical Expense Benefit System from the perspective of patients and families in the field of rare and intractable diseases.
The results of this study will serve as fundamental reference materials, compiling the opinions of patients in the rare disease community, and will be used to consider the future of the High-Cost Medical Expense Benefit System.

After analyzing the data, a preliminary report will be shared at the Japan Patients Open Meeting in August 2025, and the overall results will be presented at the National Forum on Rare and Chronic Diseases 2025 in November. Furthermore, in February 2026, the findings will be exhibited at official venues nationwide through Rare Disease Day 2026 panel displays.

https://docs.google.com/.../1FAIpQLSebwe6i64H9BJ.../viewform