For this interview, we sat down with Ms. Yoshiko Arai, founder of Nanbyo Café Omusubi . Nanbyo Café Omusubi is an organization that aims to provide opportunities for people with intractable diseases to voice their troubles and share information with each other. (“Nanbyo” is a Japanese term for rare and intractable diseases, while “Omusubi” is a play on words linking “rice ball” and “to tie” which are “Omusubi” and “Musubu,” respectively.) In addition to operating Nanbyo Café Omusubi, Ms. Arai balances the management of her own intractable diseases and her work as a social worker. In response to the ongoing Coronavirus Disease 2019 (COVID-19) pandemic, Nanbyo Café Omusubi is currently holding its events online. Ms. Arai hopes to broaden activities in which people with intractable diseases speak up and share their stories to contribute to the creation of the society that is friendlier to everyone.

For this interview, we spoke to Mr. Hiroyuki Kawakatsu, stroke survivor and Vice Chairman of the Japan Stroke Association. Mr. Kawakatsu was serving as a branch manager for an insurance company when he suffered a cerebral infarction (CI) in 2004. He was hospitalized for two months and required rehabilitation before returning to work. Through those painful experiences, he realized the importance of spreading accurate knowledge about stroke. He then began giving lectures to share his first-person perspective as someone who has experienced a CI. Thorough his lecture developed into joint awareness-building activities with the Japan Stroke Association, he eventually became Vice Chairman of the association. Beginning this year, he serves as a member of the Ministry of Health, Labour and Welfare’s (MHLW) Council for the Promotion of Stroke and Heart Disease and Other Cardiovascular Disease Measures, where he is engaged in vigorous efforts to share the perspectives of those most affected by stroke.

We spoke to Ms. Yukiko Nishimura, who is active on the global stage in the field of rare and intractable diseases as president of an NPO called Advocacy Service for Rare and Intractable Diseases (ASrid). Ms. Nishimura has a background in chemistry and has served as a technology advisor to the Ministry of Education, Culture, Sports, Science and Technology (MEXT), where she contributed as a specialist in uniting industry and academia and in technology transfer. After spending several years working with the NPO for Promotion of Research on Intellectual Property Toyo (PRIP Tokyo), she established ASrid with the goal of providing services to all stakeholders in the field of rare and intractable diseases.

Mr. Takeda was born with hemophilia and is a victim of what is known as the “HIV-tainted blood scandal,” an incident when some hemophilia patients in Japan were infected with HIV via the administration of unheated blood products. His current efforts began when a support group for people living with NCDs he was a member of invited him to their self-management training program for chronic diseases. Currently, he works energetically to advance the causes of multiple organizations representing and supporting people living with NCDs.

First diagnosed with malignant lymphoma in his 20’s and a survivor of two relapses, we spoke with Mr. Shinsuke Amano, Executive Director of the Japan Federation of Cancer Patient Groups and Group Nexus Japan. Mr. Amano is working to expand initiatives which elevate the patient voice in policy, putting patient group activities into action by representing the patient perspective as a Committee Member and Acting Chairperson of the National Cancer Control Promotion Council within Japan’s Ministry of Health, Labor and Welfare (MHLW).

For this interview, we talked to Mr. Takeshi Shukunobe, President and CEO of PPeCC and Patienthood as well as a person living with an NCD (chronic nephritis). Mr. Shukunobe told us about his activities and shared his future outlook and opinions.