My name is Hiroyuki Onishi, and I am pleased to announce that I have been appointed President of the Rare Cancers Japan (RCJ), succeeding Yoshiyuki Majima, the first President of RCJ.

In order to achieve a society where patients and families with rare cancers can live with dignity and peace of mind, our organization was established in 2018, and now has 20 organization members. Until now, the number of patients with rare cancers has been small, which has delayed the development of treatment systems, the development of treatments, basic research, and the disclosure of information. However, even though each individual rare cancer is a rare tumor, there are many types of rare cancers, and the total of all rare cancer accounts for about 20% of all cancers.

We have designated every February as Rare Cancer Awareness Month to raise public awareness of rare cancers (including pediatric and AYA cancer). At the Rare Cancer Patient Summit, we have been considering what industry, government, academia, and patients should do from their respective standpoints and what they can do in collaboration on issues such as drug discovery and collaboration for rare cancer, drug lag and loss issues, and so on. In addition, together with the MASTER KEY project, we have been promoting events to raise awareness of clinical research on rare cancers.

Our vision is to create a world where no one dies from rare cancers. We will continue our efforts to improve the rare cancer medical care system, including the development of specialized facilities and consultation centers, including specialist education, and the development of treatments and new drugs.

We will continue to make use of our long years of experience in patient association activities and work together as a network of rare cancers patient associations to build an industry-government-academia network, provide accurate information to patients and their families, access international standard treatments, and advocate for policies to realize these patient-centered medical care. We will continue to make efforts in policy advocacy to realize these goals.

All of the participating organizations will make a sincere effort to respond to your requests, and we look forward to your continued support and guidance in the future.

Thank you.

Rare Cancers Japan President
Hiroyuki Onishi
August, 2024