Japan Osler's Disease Patient Study and Exchange Meeting '2026 in Osaka' to be held.
The NPO Japan Osler's Disease Patient Association will hold a study and exchange meeting in Osaka on July 5, 2026. The event aims to deepen understanding of the designated intractable disease, Osler's disease, and connect patients and medical professionals, featuring a lecture by a specialist.
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The NPO Japan Osler's Disease Patient Association (Secretariat: Osaka, Chairman: Masahiro Murakami) is a study and exchange meeting aimed at deepening the understanding of Osler's disease (Hereditary Hemorrhagic Telangiectasia: HHT) and connecting patients, their families, and medical professionals including doctors and nurses through learning and interaction.
## Background of the Event: The Current State of Osler's Disease, an Unknown Designated Intractable Disease with a 10% Diagnosis Rate
Osler's disease (HHT) is a designated intractable disease (notification number 227) whose main sign is recurrent nosebleeds and causes vascular malformations in organs throughout the body, such as the lungs, liver, and brain.
Currently, the diagnosis rate in Japan is extremely low at only about 10%, and there are many cases of misdiagnosis or neglect without a proper diagnosis. Without appropriate follow-up, there is a risk of life-threatening complications such as brain abscess, pulmonary embolism, and severe anemia.
Because it is a rare disease, it is not well-recognized even in the medical field, and patients face challenges such as lack of information and a sense of isolation, wondering 'which medical institution should I visit?' and 'how should I self-care in daily life?'.
## Strengthening Collaboration with Knowledgeable Doctors
This exchange meeting follows the one held in 2025. This time, we will welcome Dr. Tomoya Ishiguro from the Department of Neurosurgery at Osaka City General Hospital, a member of the HHT JAPAN study group.
It will be a valuable opportunity for knowledgeable doctors to share the latest findings and for medical professionals and patients to have a direct dialogue. We also aim to strengthen medical collaboration in the region and further expand the support network.
■ Event Overview
Name: Japan Osler's Disease Patient Association '2026 IN Osaka'
Date: Sunday, July 5, 2026
Venue: J:COM Chuo Kumin Center
Address: 1-2-27 Kyutaro-machi, Chuo-ku, Osaka 541-8518
Content: Exchange meeting for patients, families, and medical professionals, lecture by a doctor knowledgeable about Osler's disease
Guest: Dr. Tomoya Ishiguro, Osler's Disease Outpatient Clinic (Neurosurgery), Osaka City General Hospital
Organizer: NPO Japan Osler's Disease Patient Association
Grant: This project is implemented with a grant from the '14th Mitsubishi Tanabe Pharma Te-no-hira Partner Program'.
This event is held as an opportunity to deepen understanding of Osler's disease (Hereditary Hemorrhagic Telangiectasia: HHT) and for patients, families, and related parties to interact and share information with peace of mind. The capacity is 17 people on a first-come, first-served basis, via the homepage.
## Background of the Event: The Current State of Osler's Disease, an Unknown Designated Intractable Disease with a 10% Diagnosis Rate
Osler's disease (HHT) is a designated intractable disease (notification number 227) whose main sign is recurrent nosebleeds and causes vascular malformations in organs throughout the body, such as the lungs, liver, and brain.
Currently, the diagnosis rate in Japan is extremely low at only about 10%, and there are many cases of misdiagnosis or neglect without a proper diagnosis. Without appropriate follow-up, there is a risk of life-threatening complications such as brain abscess, pulmonary embolism, and severe anemia.
Because it is a rare disease, it is not well-recognized even in the medical field, and patients face challenges such as lack of information and a sense of isolation, wondering 'which medical institution should I visit?' and 'how should I self-care in daily life?'.
## Strengthening Collaboration with Knowledgeable Doctors
This exchange meeting follows the one held in 2025. This time, we will welcome Dr. Tomoya Ishiguro from the Department of Neurosurgery at Osaka City General Hospital, a member of the HHT JAPAN study group.
It will be a valuable opportunity for knowledgeable doctors to share the latest findings and for medical professionals and patients to have a direct dialogue. We also aim to strengthen medical collaboration in the region and further expand the support network.
■ Event Overview
Name: Japan Osler's Disease Patient Association '2026 IN Osaka'
Date: Sunday, July 5, 2026
Venue: J:COM Chuo Kumin Center
Address: 1-2-27 Kyutaro-machi, Chuo-ku, Osaka 541-8518
Content: Exchange meeting for patients, families, and medical professionals, lecture by a doctor knowledgeable about Osler's disease
Guest: Dr. Tomoya Ishiguro, Osler's Disease Outpatient Clinic (Neurosurgery), Osaka City General Hospital
Organizer: NPO Japan Osler's Disease Patient Association
Grant: This project is implemented with a grant from the '14th Mitsubishi Tanabe Pharma Te-no-hira Partner Program'.
This event is held as an opportunity to deepen understanding of Osler's disease (Hereditary Hemorrhagic Telangiectasia: HHT) and for patients, families, and related parties to interact and share information with peace of mind. The capacity is 17 people on a first-come, first-served basis, via the homepage.