The Supporting Organization for Patients with Rare Diseases

>HOME
>About Rare Disease

There are two representative research programs under the National Policy:

Clinical Investigation and Research Program
Specified Disease Treatment Research Program

In total, 344 diseases are supported by the national policy in some way.

This program aims to stimulate rare disease research for investigation of the cause and establishment of treatments by setting up a research unit for each registered disease.
A disease must meet the following 4 conditions to get registered:

Affecting less than 50,000 patients in Japan (Rareness)
Having unknown cause
Having no established treatment
Causing long-term difficulties in daily life

Among all the rare diseases that meet the conditions above, 130 diseases are registered in this program at the present day.

This program was launched in 2009 to grasp the current status of the patients and the pathological condition of the diseases by widely requesting healthcare professionals for cooperation.
The targeted diseases are the ones for which no structured and systematic research had been done with the Clinical Investigation and Research Program.
Currently, 214 diseases are registered in this program.

This program is for the registered diseases in the "Clinical Investigation and Research Program" that:

already have fair diagnostic standards
are thought to have difficulties in investigation of the causes and development of the treatments without public funds because they are highly intractable, have high degree of severity and are relatively rare

Currently, 56 diseases is registered in this program.
Additionally, patients with the registered diseases in this program earn kinds of support such as public subsidy for their medical expenses.