Osler's Disease (HHT): A Joint Event 'TOKYO2026' by the Japan Osler's Disease Patient Association and Japan HHT Research Institute Held in Tokyo to Promote Collaboration among Medicine, Research, and Patients Regarding Intractable Disease 227
The Japan HHT Research Institute and Japan Osler's Disease Patient Association will hold the joint event 'TOKYO2026' on July 11, 2026, to raise awareness and foster collaboration for Osler's disease.
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- 📰 Published: April 6, 2026 at 22:30
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This event addresses a rare disease with an abnormally low diagnosis rate of 10% and low awareness among doctors.
The Japan HHT Research Institute will share the latest academic findings and research on Osler's disease (HHT), while the NPO Japan Osler's Disease Patient Association will share the practical experiences and self-care methods cultivated by patients in their daily lives. The purpose is to deepen mutual understanding and collaboration among patients, families, medical professionals, and researchers, as well as to facilitate interaction.
■ Background and Significance of the Event
Osler's disease is designated intractable disease 227, signaled by recurrent nosebleeds while causing vascular malformations throughout the body, including the lungs, liver, and brain.
If appropriate diagnosis and follow-up are not performed, it can lead to life-threatening severe complications such as brain abscesses, bacteremia/sepsis, severe anemia, and hepatic pulmonary hypertension.
Therefore, early detection, accurate information sharing, and the collaboration of medical, research, and social systems incorporating the patient's perspective are essential. This event aims to be an important platform to discuss and share specific directions for resolving these issues, centered on the perspective of Patient and Public Involvement (PPI).
■ Event Overview (TOKYO2026)
Event Name: Joint Event by the Japan Osler's Disease Patient Association x Japan HHT Research Institute (TOKYO2026)
Date & Time: Saturday, July 11, 2026
Venue: The Institute of Medical Science, The University of Tokyo
Hosts: Takenori Akiyama, President of Japan HHT Research Institute (HHTJAPAN)
Masahiro Murakami, Chairman of NPO Japan Osler's Disease Patient Association
*Each association's session will be held in separate rooms.
Registration: Please apply via the participation form on the website.
■ Main Operational Structure & Scheduled Speakers
Japan HHT Research Institute (HHTJAPAN)
- Congress President: Dr. Yuko Morisaki (Clinical Genetics, Sakakibara Heart Institute)
- Vice President: Dr. Takahiro Ota (Tokyo Metropolitan Tama Medical Center)
- Board Member: Dr. Takayuki Morisaki (The Institute of Medical Science, The University of Tokyo)
NPO Japan Osler's Disease Patient Association
- Chairman: Masahiro Murakami
- Kanto Branch Manager: Noboru Matsuoka
■ Two Pillars of the Program
1. Academic and Medical Perspective by the Japan HHT Research Institute
The Japan HHT Research Institute will discuss the latest research trends and challenges in clinical settings under the theme of the future vision of medical care, research, and patient support surrounding Osler's disease.
Emphasizing Patient and Public Involvement (PPI), it will explore the ideal form of new measures against rare diseases involving multi-disciplinary and multi-sectoral collaboration.
2. Practical Support and Interaction by the Japan Osler's Disease Patient Association
The patient association's part will be structured primarily around content directly linked to improving the Quality of Life (QOL) for patients and their families.
The Japan HHT Research Institute will share the latest academic findings and research on Osler's disease (HHT), while the NPO Japan Osler's Disease Patient Association will share the practical experiences and self-care methods cultivated by patients in their daily lives. The purpose is to deepen mutual understanding and collaboration among patients, families, medical professionals, and researchers, as well as to facilitate interaction.
■ Background and Significance of the Event
Osler's disease is designated intractable disease 227, signaled by recurrent nosebleeds while causing vascular malformations throughout the body, including the lungs, liver, and brain.
If appropriate diagnosis and follow-up are not performed, it can lead to life-threatening severe complications such as brain abscesses, bacteremia/sepsis, severe anemia, and hepatic pulmonary hypertension.
Therefore, early detection, accurate information sharing, and the collaboration of medical, research, and social systems incorporating the patient's perspective are essential. This event aims to be an important platform to discuss and share specific directions for resolving these issues, centered on the perspective of Patient and Public Involvement (PPI).
■ Event Overview (TOKYO2026)
Event Name: Joint Event by the Japan Osler's Disease Patient Association x Japan HHT Research Institute (TOKYO2026)
Date & Time: Saturday, July 11, 2026
Venue: The Institute of Medical Science, The University of Tokyo
Hosts: Takenori Akiyama, President of Japan HHT Research Institute (HHTJAPAN)
Masahiro Murakami, Chairman of NPO Japan Osler's Disease Patient Association
*Each association's session will be held in separate rooms.
Registration: Please apply via the participation form on the website.
■ Main Operational Structure & Scheduled Speakers
Japan HHT Research Institute (HHTJAPAN)
- Congress President: Dr. Yuko Morisaki (Clinical Genetics, Sakakibara Heart Institute)
- Vice President: Dr. Takahiro Ota (Tokyo Metropolitan Tama Medical Center)
- Board Member: Dr. Takayuki Morisaki (The Institute of Medical Science, The University of Tokyo)
NPO Japan Osler's Disease Patient Association
- Chairman: Masahiro Murakami
- Kanto Branch Manager: Noboru Matsuoka
■ Two Pillars of the Program
1. Academic and Medical Perspective by the Japan HHT Research Institute
The Japan HHT Research Institute will discuss the latest research trends and challenges in clinical settings under the theme of the future vision of medical care, research, and patient support surrounding Osler's disease.
Emphasizing Patient and Public Involvement (PPI), it will explore the ideal form of new measures against rare diseases involving multi-disciplinary and multi-sectoral collaboration.
2. Practical Support and Interaction by the Japan Osler's Disease Patient Association
The patient association's part will be structured primarily around content directly linked to improving the Quality of Life (QOL) for patients and their families.