Basic Information

NPO ASrid
(Advocacy Service for Rare and Intractable Diseases’ multi-stakeholders in Japan)

November 4, 2014

• Sunrize Hongo 4F, 30-20 5 cho-me, Hongo, Bunkyo-ku, Tokyo, 1130033, Japan

• Masatoshi IWASAKI
• Kunihiro NISHIMURA
• Yukiko NISHIMURA
• Rami SUZUKI

（in alphabetical order）

• Segolene AYME
  (Founder, Orphanet)
• Stephen GROFT
  (Former Director of NCATS, Office of Rare Diseases Research, NIH)
• Taro INABA
  (Managing Director, Remiges Ventures)
• Tateo ITO
  (Advisor, Japan Patients Association)
• Kazuhiko Mori
  (Executive Director of the Japan Pharmaceutical Manufacturers Association (JPMA))
• Keiichi Ozono
  (Iseikai Hospital)

（in alphabetical order）

• Junji ANNNEN
  (Professor of Law School, Chuo University)
• Keiko HORIGUCHI
  （COO, Pragma Inc.）

Problems to be solved

• J-RARE

  J-RARE is mixed services with patient registry (PR) and personal health record (PHR) for NANBYO(Rare and Intractable Diseases) patients by themselves in Japan. The goal of J-RARE.net is; 1) managing PHRs by rare and intractable diseases patients’ themselves to clarify their natural history, 2) bridging people who participate in studies both to reveal mechanism of pathogenesis and to develop drug for rare and intractable diseases.

• ODOD

  ODOD(Open Discussion for Orphan Drug Discovery) is a unique workshop for all stakeholders in Rare and Intractable diseases. ODOD has started since 2008 and participants are from academic, industry, patients/families, Policy implementation organization/government, venture investors, healthcare professional/Hospital, etc. ODOD has several key topics; presentation from researcher and patient/family, and general discussion. ODOD is hold by invitation only, because all attendees are able to express their opinions/feelings freely.

• Rare Disease Day

  Rare Disease Day takes place on the last day of February each year.The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. The Secretariat office of RDD Japan has established in ASrid and promoted RDD events whole in Japan. In 2014, there were 21 RDD events from Hokkaido to Okinawa.

• COVID19 situation in Japan

  We summarizes the recommendations of domestic patient organizations and other information related to the new coronavirus infection (COVID-19). It also introduces the results of patients / families surveys and research conducted in Japan.

• WITH/AMONG PATIENT-RELATED ORGANIZATIONS

  This section introduces case studies of collaborative research with patient/patient advocacy organizations in the field of rare and intractable diseases (NANBYO) that can be made public.

• WITH/AMONG STAKEHOLDER ORGANIZATIONS

  This section introduces case studies of collaborative research with multi-stakeholders in the field of rare and intractable diseases (NANBYO) that can be made public.

• JPA

  JPA is a non-profit umbrella organization established in 2005. It focuses on rare and intractable diseases (NANBYO in Japanese) and has a membership of approximately 300,000 from 84 organizations, including individual patient groups and regional canters. All patient groups and regional canters are focusing to “NANBYO” area, which include with rare diseases, intractable diseases, and severe chronic diseases. JPA provides patient/family services and advocacy on public policies.

• 
  The Pediatric NANBYO Support Network

  The Pediatric NANBYO Support Network has created a network among pediatric NANBYO diseases’ patients, families and other persons involved. The network has also promoted various activities for enhancing QOL (quality of live) of children and families.

• General Incorporated Association PPeCC

  PPeCC aims to realize a society where people can say it is okay to have a disease. Established in 2019, PPeCC has a diverse range of projects involving people with disorders, families, and other supporters from various walks of life.

• Pragma Corporation

  Pragma provides outsourcing and consulting services in accounting and human resource management. In addition, Pragma offers various services that meet our clients' needs, including accounting, tax, payroll, and social insurance.

• JONES DAY (PROVIDING LEGAL KNOWLEDGE)

  Founded in 1893, Jones Day is a US law firm with a history of more than 100 years. Since establishing the Tokyo office in 1989, we are providing comprehensive and efficient legal services to the various problems facing the business world in Japan and international markets.