Rare disease and NANBYO: Trends of Patients/families and Patient Associations in Japan (COVID-19)
COVID-19 information related to rare and intractable disease (NANBYO) area patients and their families in Japan have been introduced on this page.
Report;
"Survey on the Impact of Novel Coronavirus Infection (COVID-19) on Patients and Families with Rare and Intractable Diseases" conducted by ASrid.
Online Roundtable Discussion (June 30, 2021)
Online Roundtable Discussion on "Research on the Impact of COVID-19 on Patients and Families with Rare and Incurable Diseases" (in Japanese)
The final report (established on June. 24, 2021)
Survey on the Impact of Novel Coronavirus Infection (COVID-19) on Patients and Families with Rare and Intractable Diseases / Final version (in Japanese)
Press-release (established on June. 24, 2021)
Preliminary report (established on Nov. 7, 2020) https://asrid.org/files/2105_COVID%E6%82%A3%E8%80%85%E8%AA%BF%E6%9F%BB_%E9%80%9F%E5%A0%B1_ASrid_revised.pdf (in Japanese)
"Survey on the Impact of Novel Coronavirus Infection (COVID-19) on Patient groups/associations with Rare and Intractable Diseases" conducted by ASrid.
The final report (established on July 1, 2021)
Recommendation;
JPA (Japan Patients Association) is the largest NANBYO (rare, intractable, and chronic diseases) patient association in Japan. JPA submitted a request for the government's response to COVID 19, depending on the spread of the infection.
Request regarding the response to the new coronavirus (February 25, 2020)
Urgent Request (March 26, 2020)
-> In response to this request, the MHLW extended the validity period of beneficiary certificates for publicly-funded medical care by one year (April 2020).
Urgent Request (November 25, 2020)