The Future of Community and Mobility Week
Addressing the 'Diagnostic lag' in Rare Diseases: Achieving Health Equity through Technology and Societal Efforts
EXPO 2025 Thematic Project "Resonance of Lives" (Producer MIYATA Hiroaki)
To ensure Health Equity for patients with rare diseases, the issue of reducing the 'diagnostic lag'—the extended time from disease onset to diagnosis—will be addressed. Discussions will be made with specialists, including medical professionals, academic societies, patient organizations, and AI companies, to explore solutions from various perspectives and to deepen the understanding of the challenges faced by patients with rare and intractable diseases.
Discussion
- Health #Rare Disease #Health Equity
This programme is scheduled to be live streamed at the Virtual Expo. We will inform you once it is confirmed.
-
Signature Programme
- * Programme times and content are subject to change. Any changes will be announced on this website and via the ticket booking system.
- Time and
Date of
the event -
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2025.05.23[Fri]
18:30 ～ 20:15
(Venue Open 18:00)
-
- Venue
- Theme Weeks Studio
©SANNA
Programme details
There are over 10,000 types of rare diseases worldwide, but fewer than 10% have approved treatments, and it can take about 3.4 years to receive a proper diagnosis. This event brings together experts, including medical professionals, academic societies, patient organizations, and AI companies, to discuss the challenges faced by patients with rare diseases. Key topics include the delays in diagnosis and potential solutions, as well as the importance of ensuring faster access to appropriate treatments. The discussion aims to promote understanding and advance efforts toward improving health equity.
Cast
Speakers
Hiroshi Oguro
Board Member of Japan Patient Association
He is a board member of the National Collagen Disease Patients Association, and the secretary of the Osaka branch. He is also a board member of the Japan Patient Association (JPA). He lives in Sakai City, Osaka Prefecture, and is the director of the Osaka Intractable Disease Consultation Support Center. He was diagnosed with mixed connective tissue disease (MCTD), a type of collagen disease, in 1999, and 25 years have passed since then. He has national qualifications as a physiotherapist and social worker.
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Toshiki Takenouchi
Professor and Chairman, Department of Pediatric Neurology, Dentistry and Pharmaceutical Sciences, Okayama University Graduate School of Medicine
He holds a Doctor of Medicine (MD, PhD) and graduated from the Keio University School of Medicine in 2002. His specialties include general pediatrics, pediatric neurology, and clinical genetics. He is also specialists in pediatrics and pediatric neurology in the United States. He serves as a council member of the Japanese Society of Child Neurology and a director of the Japanese Society of Pediatric Genetics.
In 2023, he received the President's Award of Japan Agency for Medical Research and Development (AMED). As the lead researcher of the national project “Priority-i,” he is dedicated to advancing the rapid genetic diagnosis in sick neonates and infants.
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Yukiko Nishimura
President and founder, ASrid (Advocacy Service for Rare and Intractable Diseases)
Yukiko Nishimura is the President and founder of NPO ASrid (Advocacy Service for Rare and Intractable Diseases’ multi-stakeholders in Japan). She has worked and collaborated with patients, patients’ families, and all stakeholders in the rare and intractable diseases and orphan drug field for over 15 years. She has been a board director of APARDO since 2021. She has served as the Vice Chair of PACC, IRDiRC (2017-2021). She has also served as an advisory board member of JPMA and AMED since 2024. She obtained her BSc and MSc from Meiji University and also graduated from The University of Tokyo, Graduate School of Science.
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Shinsuke Muto
CEO, Integrity Healthcare Co., Ltd.
After working in cardiology at the University of Tokyo Hospital and Mitsui Memorial Hospital, he served as a physician to the Imperial Household Agency. After working at McKinsey & Company, he founded the Tetsuyu Institute Medical Corporation. He is the Chairman of the Board of Directors of Integrity Healthcare Co., Ltd. and the Community Healthcare Collaboration Platform Co., Ltd. He is also a clinical professor at Tokyo University of Science, a board member of the Japan Health Policy Institute, a member of the Keizai Doyukai (Japan Association of Corporate Executives), and a trustee of the International House of Japan.
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Yoshihisa Yamano
Director, Center for Genomic Medicine and Clinical Research Data Center / Chair Professor, Department of Neurology, St. Marianna University School of Medicine
He graduated from the Faculty of Medicine at Kagoshima University and completed his graduate studies at the same university. After working as a researcher at the U.S. National Institutes of Health (NIH), he joined St. Marianna University School of Medicine in 2006. Since 2020, he has served as the Chair Professor of Neurology. He also holds dual roles as the Director of the Center for Genomic Medicine and the Director of the Clinical Research Data Center at the university hospital, where he conducts research on rare and intractable diseases using patient data. His areas of expertise include neurology, HTLV-1-associated myelopathy (HAM), and neuroimmunological infections. He is a board member of the Japanese Society of Neurology, the Japanese Society of Neurological Therapeutics, the Japan HTLV-1 Association, and other professional organizations.
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Misako Hamamura
President, Alexion Pharma GK
She worked at Takeda Pharmaceutical Company in R&D and portfolio management, including an assignment in the U.S. She later served as the Head of Business Development for the Japan Pharma Business Unit (JPBU) and as the Kobe Branch Manager. Since Takeda's integration with Shire in 2019, she has led the Rare Disease Business Unit within JPBU.
In 2022, following the integration of Nihon Pharmaceutical (plasma-derived therapy business), she expanded the Rare Disease Business Unit and served as its head until 2024. She contributed to the creation of the White Paper on Rare Disease Challenges in Japan, as well as the establishment of diagnostic consortia and patient support programs.
She joined Alexion Pharma GK in July 2024.
She holds a bachelor's degree in pharmacy from Kyoto University, a Ph.D. from Juntendo University Graduate School of Medicine, and an MBA.
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Hiroaki Miyata
Theme Producer, the Expo 2025 Osaka, Kansai / Professor, School of Medicine, Keio University
Specialises in data science, scientific methodology, and value co-creation; His research revolves around promoting social reform through utilising data science and other scientific methods to change society for the better. He collaborates with a wide range of stakeholders, including not only academia but also government bodies, economic organizations, NGOs, and companies, to envision a new social vision. One of the visions of society that Miyata has co-created is a “resonant society” characterised by vibrancy and diversity where each individual shines through experiencing that world with others.
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Co-organiser
Alexion Pharma GK
More Information
The Future of Community and Mobility Week
Addressing the 'Diagnostic lag' in Rare Diseases: Achieving Health Equity through Technology and Societal Efforts
To ensure Health Equity for patients with rare diseases, the issue of reducing the 'diagnostic lag'—the extended time from disease onset to diagnosis—will be addressed. Discussions will be made with specialists, including medical professionals, academic societies, patient organizations, and AI companies, to explore solutions from various perspectives and to deepen the understanding of the challenges faced by patients with rare and intractable diseases.
-
2025.05.23[Fri]
18:30～20:15
(Venue Open 18:00)
- Theme Weeks Studio
- * Programme times and content are subject to change. Any changes will be announced on this website and via the ticket booking system.
©SANNA
This programme is scheduled to be live streamed at the Virtual Expo. We will inform you once it is confirmed.
OTHER PROGRAM
The Future of Community and Mobility Week
