The Ministry of Health, Labour and Welfare (MHLW) in Japan has long dedicated efforts to research, diagnosis and treatment for rare diseases (RDs), with an official designation system for RDs and intractable diseases known as ‘Nanbyo’.
However, information about the overall economic impact on Japanese people living with rare diseases (PLWRD), and their caregivers and society is still scarce.
To address this information gap, CRA undertook a large-scale survey of PLWRD in Japan, collecting data on 64 RDs (all included in the list of Nanbyo diseases). The authors used the survey responses, combined with information on the cost of care, to estimate the economic costs for PLWRD and their caregivers related to use of healthcare services, supportive therapy as well as ability to work.
The total economic cost of PLWRD in Japan is significant and exceeds that of other leading causes of death in Japan. This study was undertaken to inform policymaking that affects RD awareness, diagnosis, treatment and access to supportive care to reduce the economic impact.
Read more about the economic cost of living with a rare disease in Japan here.
