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International Symposium on CAEBV: A Global Initiative for Rare Disease Awareness

Chronic Active Epstein-Barr Virus Disease (CAEBV) is a rare yet severe disease that often goes undiagnosed, tragically leading to loss of life. In an effort to improve diagnosis and treatment while fostering international collaboration, St. Marianna Medical University in Japan is launching a crowdfunding initiative to support the first CAEBV International Symposium, slated for March 2026 at TBS Science University in Tokyo.

Purpose of the Symposium

The principal aim of this symposium is to establish a platform that not only brings together researchers and medical professionals but also patients, their families, and the broader community. By sharing knowledge and advancements in CAEBV research, this initiative seeks to develop a robust network of international cooperation.

CAEBV is characterized by the infection of T cells or NK cells by the Epstein-Barr virus, leading to life-threatening complications. Currently, the only potential curative treatment is hematopoietic stem cell transplantation, yet the cause of this disease remains largely unknown. Although reports have increased from regions beyond Asia, such as Europe and North America, global recognition of CAEBV is still insufficient, leaving many patients without adequate diagnosis or treatment.

This initiative will galvanize awareness and facilitate discussions about CAEBV, establishing Japan as a central provider for diagnosis and treatment options on an international stage.

Crowdfunding Objectives

The crowdfunding campaign serves multiple purposes:

• - Bringing international researchers and physicians to the symposium
• - Supporting the participation of young researchers
• - Covering organizational and translation expenses during the event

The initial target for this campaign is 3 million yen, with a secondary target of 5 million yen, and currently, the project is aiming for a stretch goal of 7 million yen to enhance the scope of the symposium.

Achieving the Goals

Scholarship for International Young Researchers

One of the key objectives is to offer extensive resources for young researchers from various countries, especially from Europe, Asia, and beyond. Contributions made will directly support travel and accommodation for these scholars, allowing a rich exchange of ideas and collaboration.

Simultaneous Interpretation Services

The inclusion of simultaneous interpretation in English and Japanese will ensure that all participants, regardless of their language proficiency, can engage in meaningful discussions, breaking down communication barriers.

Future Direction

The establishment of this annual symposium is essential, paving the way for ongoing international collaborations. This event will help build a foundation for future joint research efforts and innovative therapeutic approaches, leading the way for CAEBV research to evolve into a global forefront.

In the words of Professor Ayako Arai, the project lead, "CAEBV is a disease characterized by a lack of information and support for patients and their families. Through this symposium, we aim to create a future where accurate diagnosis and treatment information are shared worldwide."

How You Can Help

Join us in advancing the future of medicine by supporting the crowdfunding campaign. Every contribution will propel this essential dialogue forward, helping to build a brighter future for individuals affected by CAEBV.

For further information about the project and to contribute, please visit here. Your support could be the catalyst for change in the lives of many suffering from this rare disease.