Recently, major rare cancer research projects have been funded in Japan as well as USA and EU where traditionally, research has been regarded as difficult and economically non-rewarding due to few available patients and small market. With the advent of precision medicine with genomic analysis in recent years, which allow researchers to comprehensively examine gene abnormalities, and find a small group of patients where drugs are found to be very efficacious. This development is encouraging to pharmaceutical companies so that they can walk down the path to drug development in the rare cancer arena. On July 31st 2017, National Cancer Center in Tokyo announced the Master Key genomic research project which targets rare cancers and aims to develop drugs for them. In order to capture this opportunity and quickly improve the situation for rare cancer patients in Japan, 11 rare cancer patient organizations gathered in August 2017 to launch a “Rare Cancer Patient Organization Network.” In February 2018, “Rare Cancers Japan” was launched.
The members of Rare Cancers Japan (RCJ) have been engaged in patient support activities for many years. RCJ’s objective is to accelerate the rare cancer drug development for patients who had been suffering from not having efficacious drugs. By creating a network of stakeholders of industry, government, academics, as well as patient groups who had been absent from this table for a long time. As seen in EU and USA, we would like to participate in multi-stakeholder meetings and contribute towards new drug development in Japan. We would also like to provide accurate research and clinical trial information to patients and families about the international standard therapy. We would like to work with domestic as well as oversee patient support groups, and also participate in academic meetings both domestic and oversees. We also advocate and help to formulate the rare cancer policy in support of rare cancer patients.
We can accomplish a lot by working together and joining the global community of rare cancers. We would like to hold our annual multi-stakeholder Rare Cancers Japan Forum and also participate in rare cancer symposia with key opinion leaders within the global rare cancer community, to assess our progress and to see where the challenges are, what is working and what needs more work.
There is much work to be done to respond to unmet medical needs of rare cancer patients.
Rare Cancers Japan President