[Registration Open] (Webinar) 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)
date : 11/25/2024
Tags: HGPI Seminar, Other activities
Health and Global Policy Institute (HGPI) launched the Intractable & Rare Diseases Project in FY2024 and hosted a symposium titled “Future Measures for Intractable Diseases from the Perspectives of Patients and Citizens” to mark Intractable Disease Day on May 23, 2024. There, we held multi-stakeholder discussions on the future of measures for intractable diseases. A report on the symposium can be found here.
Among the many issues in health policy, intractable disease is one of the most important. While intractable diseases are often discussed alongside rare diseases, they are characterized by the fact that for many intractable diseases, the underlying mechanisms have yet to be identified and clear treatment methods have yet to be established. Certain aspects of these conditions also place particularly heavy physical and psychological burdens on patients, such as the need to undergo long-term treatment. Japan currently designates 341 conditions as “intractable diseases,” and they are estimated to affect over 1 million people.
The enactment of the Act on Medical Care for Patients with Intractable Diseases in 2014 set a direction that includes promoting healthcare and improving the social environment. However, a number of lingering challenges related to intractable disease measures have been pointed out. At our symposium to mark Intractable Disease Day on May 23, 2024, we examined a number of items like the role of designated intractable diseases, disseminating information to society, and the establishment of a system to promote early diagnosis, and emphasized the importance of eliminating diagnosis lag and to have participation from people with lived experience with intractable diseases and citizens in the policy-making process. There were also high expectations expressed for discussions to expand beyond treatment and encompass daily living for people living with intractable diseases and their families.
For the 130th HGPI Seminar, we will host Ms. Nana Ando, who serves as a journalist on the medical desk at the Editorial Bureau of the Yomiuri Shimbun Tokyo Headquarters. From the perspective of a medical journalist and as a family member of someone living with an intractable disease, Ms. Ando will discuss current circumstances surrounding intractable diseases, the role of the media as viewed through the lens of her past coverage, and what is needed in terms of future intractable disease policy.
[Event Overview]
- Speaker: Ms. Nana Ando (Journalist, Medical Desk, Editorial Bureau, Tokyo Headquarters, The Yomiuri Shimbun)
- Date & Time: Tuesday, January 28, 2025; 15:00-16:30 JST
- Format: Online (Zoom webinar)
- Language: Japanese
- Participation Fee: Free
- Capacity: 500 participants
■Profile:
Ms. Nana Ando (Journalist, Medical Desk, Editorial Bureau, Tokyo Headquarters, The Yomiuri Shimbun)
Ms. Nana Ando is a graduate of the Chuo University Faculty of Law. She joined the Tokyo Headquarters of the Yomiuri Shimbun in 2010. After serving in posts at the Nagano Office and in the Economics Department, she has been covering healthcare as a journalist on the medical desk since 2017. Her main areas of coverage currently include pediatrics and reproductive medicine.
Ms. Ando’s younger sister lives with a designated intractable disease called Rett syndrome, and she became a medical journalist out of her desire to broadly disseminate reliable information to people living with intractable diseases and their families. In that role, she continues to report on research on new methods of diagnosing and treating intractable diseases, and on issues in the daily living environment for affected parties.
Top Research & Recommendations Posts
- [Research Report] Survey of Japanese Nursing Professionals Regarding Climate Change and Health (Final Version) (November 14, 2024)
- [Policy Recommendations] Developing a National Health and Climate Strategy for Japan (June 26, 2024)
- [Research Report] The 2023 Public Opinion Survey on Satisfaction in Healthcare in Japan and Healthcare Applications of Generative AI (January 11, 2024)
- [Research Report] Survey of Japanese Physicians Regarding Climate Change and Health (December 3, 2023)
- [Announcement] A Turning Point Towards Building Green Healthcare Systems (June 5, 2024)
- [Announcement] Signs “A COP29 for People and Planet: Recommendations from the international health and climate community” (November 11, 2024)
- [Policy Recommendations] The Women’s Health Promotion Project “Policy proposal for Promotion of Menopausal Women’s Health as a Social Issue to be Considered by Industry, Government, Academia and the Private Sector” (July 31, 2024)
- [Research Report] Building a Mental Health Program for Children and Measuring its Effectiveness (June 16, 2022)
- [Reserch Report] Antimicrobial Resistance (AMR) Measures in Sweden (November 21, 2024)
- [Discussion Points] Women’s Health Project Expert Meeting “The Ideal System for Perinatal Medical Care in Japan in the Era of Declining Birth Rates” (November 11, 2024)
Featured Posts
-
2024-11-21
[Reserch Report] Antimicrobial Resistance (AMR) Measures in Sweden (November 21, 2024)
-
2024-11-25
[Registration Open] (Webinar) 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)
-
2024-11-29
[Registration Open] (Webinar) The 129th HGPI Seminar “The Connection Between Planetary Environment and Human Health as Seen Through the JECS and Future Expectations” (December 23, 2024)
-
2024-12-01
[Activity Report] Announcing the Launch of the Japan’s Patient Expert Platform (J-PEP) Website (December 1, 2024)