[First time in Hiroshima Prefecture] Learning Exchange Meeting for Patients, Families, and Medical Professionals on Osler-Weber-Rendu Disease (HHT), a Designated Intractable Disease 227 with a 10% Diagnosis Rate, to be Held on July 26, 2026
The Japan HHT Patients Association will hold its first learning exchange meeting in Hiroshima Prefecture on July 26, 2026, for patients, families, and medical professionals regarding Osler-Weber-Rendu disease (HHT), a rare intractable disease with a low diagnosis rate. The event aims to promote understanding, early diagnosis, and medical collaboration for this condition.
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- 📰 Published: May 12, 2026 at 22:19
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Osler-Weber-Rendu disease (HHT) is a rare autosomal dominant genetic intractable disease, affecting 1 in 8,000 to 10,000 people, and its recognition among doctors is very low.
Applying this to Hiroshima Prefecture's population of approximately 2.69 million, there could be about 270 to 340 patients in the prefecture. However, symptoms are often misunderstood as "just a nosebleed," and many people are thought to be living undiagnosed, as nosebleeds are a sign. Therefore, providing correct understanding and information leading to early diagnosis in the region is crucial to avoid severe symptoms.
The Japan HHT Patients Association, a specified non-profit organization, will hold a learning exchange meeting for patients, families, and medical professionals regarding Osler-Weber-Rendu disease (HHT / Hereditary Hemorrhagic Telangiectasia) titled "Japan HHT Patients Association 2026 Hiroshima" on Sunday, July 26, 2026, at "Hiroshima Nanbyoren" within the Hiroshima Prefectural Health and Welfare Center in Minami-ku, Hiroshima City.
This will be the first time the association holds a learning exchange meeting in Hiroshima Prefecture.
Patients and their families in the Chugoku and Shikoku regions have voiced concerns such as "cannot find a medical institution for consultation," "don't know which department to consult," and "do not receive sufficient explanation about systemic symptoms other than nosebleeds."
Osler-Weber-Rendu disease is often overlooked as "just recurrent nosebleeds" and, if left untreated or merely observed, can affect blood vessels throughout the body, including the lungs, brain, liver, and digestive tract. However, because it is a rare disease, the diagnosis rate is very low at 10%, and it is not sufficiently known in medical settings, leading to delayed diagnosis and difficulty in accessing appropriate medical care.
At this Hiroshima event, Masanori Murakami, a patient and chairman of the Japan HHT Patients Association, will give an easy-to-understand lecture based on his own experience and knowledge accumulated through patient association activities. He will cover basic knowledge of HHT, daily management of recurrent nosebleeds, an overview of systemic symptoms in the lungs, brain, and liver, genetic testing, and the importance of information sharing among patients, followed by a discussion with participants.
We aim for this event to be an opportunity to promote understanding and medical collaboration in the region, with participation from patients themselves, their families, as well as doctors, nurses, pharmacists, welfare officials, and administrative officials.
◆Background of the Event◆
Osler-Weber-Rendu disease, also known as HHT, is a hereditary vascular disorder that can be accompanied by nosebleeds, telangiectasias on the skin and mucous membranes, pulmonary arteriovenous malformations, cerebral vascular malformations, hepatic vascular lesions, and gastrointestinal bleeding.
In particular, daily recurrent nosebleeds and oral bleeding significantly impact patients' daily lives.
Unlike common nosebleeds, it requires treatment and management positioned as "multiple capillary hemorrhages in the nasal cavity." However, medical professionals such as doctors, nurses, and paramedics who are unaware of HHT may perform actions like "pinching the nose, strong compression, or tilting the head down," which can further damage fragile blood vessels in the nasal cavity, leading to severe bleeding.
Focusing only on nosebleeds can also lead to cases where it does not connect to examinations and management as a "systemic disease."
In the Chugoku and Shikoku regions, some patients have difficulty accessing specialized medical institutions or information, leading to inquiries to the patient association. The Japan HHT Patients Association planned this Hiroshima event with the aim of reducing information disparities in each region, ensuring patients and families are not isolated, and creating a place where they can obtain necessary knowledge and connections.
◆Main Contents of the Day◆
On the day, a wide range of information necessary for patients and families will be covered, from an overview of HHT to self-care in daily life, how to interact with medical institutions, and understanding systemic symptoms.
◆Scheduled Contents are as follows◆
- Overview of HHT and current challenges
- Management of recurrent nosebleeds and oral bleeding
- Information sharing on hemostatic agents and daily hemostatic care
- Overview of systemic symptoms in the lungs, brain, and liver
- Genetic testing and disease types
- Discussion among patients and families
- Sharing concerns about medical care and daily life
From the unique perspective of a patient association, not only medical information but also the actual worries and anxieties patients face in daily life and difficulties in medical settings will be shared.
◆Event Outline / Event Name◆
Japan HHT Patients Association "2026 Hiroshima" Learning Exchange Meeting
◆Date and Time◆
July 26, 2026 (Sunday) Reception starts 9:30 AM ~ 10:00 AM - 4:00 PM (scheduled)
◆Venue◆
Hiroshima Nanbyoren
734-0007
1-6-29 Minami-machi, Minami-ku, Hiroshima City
Hiroshima Prefectural Health and Welfare Center 7F
◆Speaker◆
Specified Non-Profit Organization Japan HHT Patients Association
Chairman Masanori Murakami
◆Target Audience◆
HHT patients
Families
Undiagnosed or suspected cases
Medical professionals such as doctors, nurses, pharmacists
Welfare and administrative officials
Those interested in supporting rare intractable diseases
◆Capacity: 30 people◆
*First-come, first-served. Registration may close once capacity is reached.
◆Participation Fee: Free◆
◆Application Method◆
Accepted via the Japan HHT Patients Association website "Participation Form QR Code," "Email," or "Phone."
Inquiries
Specified Non-Profit Organization Japan HHT Patients Association
Applying this to Hiroshima Prefecture's population of approximately 2.69 million, there could be about 270 to 340 patients in the prefecture. However, symptoms are often misunderstood as "just a nosebleed," and many people are thought to be living undiagnosed, as nosebleeds are a sign. Therefore, providing correct understanding and information leading to early diagnosis in the region is crucial to avoid severe symptoms.
The Japan HHT Patients Association, a specified non-profit organization, will hold a learning exchange meeting for patients, families, and medical professionals regarding Osler-Weber-Rendu disease (HHT / Hereditary Hemorrhagic Telangiectasia) titled "Japan HHT Patients Association 2026 Hiroshima" on Sunday, July 26, 2026, at "Hiroshima Nanbyoren" within the Hiroshima Prefectural Health and Welfare Center in Minami-ku, Hiroshima City.
This will be the first time the association holds a learning exchange meeting in Hiroshima Prefecture.
Patients and their families in the Chugoku and Shikoku regions have voiced concerns such as "cannot find a medical institution for consultation," "don't know which department to consult," and "do not receive sufficient explanation about systemic symptoms other than nosebleeds."
Osler-Weber-Rendu disease is often overlooked as "just recurrent nosebleeds" and, if left untreated or merely observed, can affect blood vessels throughout the body, including the lungs, brain, liver, and digestive tract. However, because it is a rare disease, the diagnosis rate is very low at 10%, and it is not sufficiently known in medical settings, leading to delayed diagnosis and difficulty in accessing appropriate medical care.
At this Hiroshima event, Masanori Murakami, a patient and chairman of the Japan HHT Patients Association, will give an easy-to-understand lecture based on his own experience and knowledge accumulated through patient association activities. He will cover basic knowledge of HHT, daily management of recurrent nosebleeds, an overview of systemic symptoms in the lungs, brain, and liver, genetic testing, and the importance of information sharing among patients, followed by a discussion with participants.
We aim for this event to be an opportunity to promote understanding and medical collaboration in the region, with participation from patients themselves, their families, as well as doctors, nurses, pharmacists, welfare officials, and administrative officials.
◆Background of the Event◆
Osler-Weber-Rendu disease, also known as HHT, is a hereditary vascular disorder that can be accompanied by nosebleeds, telangiectasias on the skin and mucous membranes, pulmonary arteriovenous malformations, cerebral vascular malformations, hepatic vascular lesions, and gastrointestinal bleeding.
In particular, daily recurrent nosebleeds and oral bleeding significantly impact patients' daily lives.
Unlike common nosebleeds, it requires treatment and management positioned as "multiple capillary hemorrhages in the nasal cavity." However, medical professionals such as doctors, nurses, and paramedics who are unaware of HHT may perform actions like "pinching the nose, strong compression, or tilting the head down," which can further damage fragile blood vessels in the nasal cavity, leading to severe bleeding.
Focusing only on nosebleeds can also lead to cases where it does not connect to examinations and management as a "systemic disease."
In the Chugoku and Shikoku regions, some patients have difficulty accessing specialized medical institutions or information, leading to inquiries to the patient association. The Japan HHT Patients Association planned this Hiroshima event with the aim of reducing information disparities in each region, ensuring patients and families are not isolated, and creating a place where they can obtain necessary knowledge and connections.
◆Main Contents of the Day◆
On the day, a wide range of information necessary for patients and families will be covered, from an overview of HHT to self-care in daily life, how to interact with medical institutions, and understanding systemic symptoms.
◆Scheduled Contents are as follows◆
- Overview of HHT and current challenges
- Management of recurrent nosebleeds and oral bleeding
- Information sharing on hemostatic agents and daily hemostatic care
- Overview of systemic symptoms in the lungs, brain, and liver
- Genetic testing and disease types
- Discussion among patients and families
- Sharing concerns about medical care and daily life
From the unique perspective of a patient association, not only medical information but also the actual worries and anxieties patients face in daily life and difficulties in medical settings will be shared.
◆Event Outline / Event Name◆
Japan HHT Patients Association "2026 Hiroshima" Learning Exchange Meeting
◆Date and Time◆
July 26, 2026 (Sunday) Reception starts 9:30 AM ~ 10:00 AM - 4:00 PM (scheduled)
◆Venue◆
Hiroshima Nanbyoren
734-0007
1-6-29 Minami-machi, Minami-ku, Hiroshima City
Hiroshima Prefectural Health and Welfare Center 7F
◆Speaker◆
Specified Non-Profit Organization Japan HHT Patients Association
Chairman Masanori Murakami
◆Target Audience◆
HHT patients
Families
Undiagnosed or suspected cases
Medical professionals such as doctors, nurses, pharmacists
Welfare and administrative officials
Those interested in supporting rare intractable diseases
◆Capacity: 30 people◆
*First-come, first-served. Registration may close once capacity is reached.
◆Participation Fee: Free◆
◆Application Method◆
Accepted via the Japan HHT Patients Association website "Participation Form QR Code," "Email," or "Phone."
Inquiries
Specified Non-Profit Organization Japan HHT Patients Association