2020 Volume 30 Issue 2 Pages 55-63
Some diseases remain unclassifiable by standards of modern medicine—these are called rare and undiagnosed diseases (RUD). This paper analyzes proceedings of policy for rare diseases and intractable/rare diseases act to examine present status of public support for rare and undiagnosed diseases in Japan. Based on the analysis, currently there is no legalized support for patients with diseases without a name, and the situation is expected to remain unchanged. Namely, in proceedings of the intractable/rare diseases act it is stated that policy for rare diseases should support RUD patients, however closer analysis of the policy reveals it is impossible to provide support for patients with unnamed diseases. Thus, it is clear no real consideration was given to RUD patients in both documents. Here I aim to point out the most important issues that should be considered in the policy in order to improve it, so it will truly be inclusive of the needs of RUD patients.
