Zenkoku Prion-byo Kanja-Kazoku-kai Sazanka no Kai (Nationwide Prion Disease Patients and Families Association, Japan)

Sazanka no Kai is the Japanese national association for people affected by prion disease and their families. It was formally set up in May 2023 as the successor to a smaller group that had run telephone consultations since a founding effort that began in 2018. It offers peer meetings online, a chat channel, an enquiry form and plain-language pages on prion disease, diagnosis and the natural history survey. CJDISA lists it as an associate member for Japan. It sits close to the Japanese research and surveillance community: its academic advisor is a senior figure at the National Center of Neurology and Psychiatry, and it reports on and speaks at the national prion disease research and officials meetings. Information only, not medical advice.

Key facts

  • Rules were enacted on 1 May 2023 and amended from 1 May 2025 after board approval on 20 April 2025; the fiscal year runs 1 May to 30 April.
  • Stated purpose: share information among patients, families and supporters, mutual help, understanding of the disease, and caregiving and research news.
  • Membership classes are individual (one patient or family member), supporting (individuals or corporations, no vote) and volunteers; fees are 2,000 yen per year for individuals and from 5,000 yen per unit for supporters.
  • Rules state the association does not investigate any link between prion disease and COVID-19 vaccines.
  • Activities listed: a yearly general meeting, exchange meetings every 1 to 2 months, information posts, the website, support for research and public awareness.
  • Services seen: monthly online meeting on LINE, a LINE chat group, an online enquiry and consultation form, a member login area, and downloadable awareness posters.
  • The site is run free of charge by the Japan Patient Support Foundation under its Kanshin Hiroba project; no phone, email or postal address is shown.
  • CJDISA's directory lists Japan under associate member organisations, using the Japanese name of this group; the group's own site states the same.
  • The natural history survey pages describe a survey run by JACOP, joined through a treating doctor or the Prion Disease Surveillance Secretariat; the page does not say the association runs it.
  • The group joined the RD Network (national rare disease alliance launched by the Japan Patient Association) on 14 March 2026 and the Japan Rare Disease Consortium meeting on 27 February 2026.
  • It gave a 15 minute talk at the FY2025 national prion disease officials meeting on 6 February 2026 and attended the research group report meetings in January 2025 and January 2026.
  • The 2025 officials meeting item records that interruption of natural history survey follow-up, for example when the treating doctor changes, is a recognised difficulty.
  • Officers are a representative, treasurer, secretary and public relations officer, with an academic advisor from the National Center of Neurology and Psychiatry.
  • A search excerpt of a 2017 health ministry research report says the research group leader decided to support founding a new patient organisation; this was not opened in full.

Timeline

  1. 2017Research group leader decides to support creating a new patient organisation (search excerpt only).
  2. 2018Founders consult the Japan Patient Association about forming a prion disease patient group; a preparatory committee and a telephone consultation group follow.
  3. 2023Sazanka no Kai established as successor; rules enacted 1 May.
  4. 2024Website renewed (18 September).
  5. 2024Awareness Day special page opened (4 November).
  6. 2025Rules amended, fiscal year moved to 1 May start.
  7. 2025Attends first Japan Patient Meeting (31 August).
  8. 2026Talk at national prion disease officials meeting (6 February); Japan Rare Disease Consortium meeting (27 February).
  9. 2026Joins RD Network (14 March).
  10. 2026Booth at the Japanese Society of Neurology annual meeting, Yokohama (22 to 23 May).

Last checked 1 November 2026

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