Selbsthilfegruppe Prionen-Krankheiten Oesterreich

The Selbsthilfegruppe Prionen-Krankheiten Oesterreich is an Austrian relatives-for-relatives support platform for Creutzfeldt-Jakob disease, fatal familial insomnia, Gerstmann-Straussler-Scheinker disease and other rare human prion diseases. It offers information, peer meetings and outreach, works closely with the national reference centre OERPE at MedUni Wien, and says it represents prion diseases within Pro Rare Austria. It is listed as a member association of CJDISA. In 2026 it runs online relatives meetings jointly with the German CJK Initiative and announces a German, Austrian and Swiss conference in Vienna for 13-15 September 2026. Its legal form is probably an Austrian Verein but this rests on file names only. Information only, not medical advice.

Key facts

  • The group describes itself as a self-help platform for relatives, carers and affected people covering CJD, FFI, GSS and other rare human prion diseases.
  • It offers information exchange, advice, personal meetings, downloadable brochures, and links to registers, studies, hospice and counselling services.
  • Online relatives meetings are held on Friday evenings at 19:00; the listed dates are 16 October, 20 November and 11 December 2026, organised with the German CJK Initiative and an Austrian relatives association.
  • The site offers the 2024 official guideline on CJD diagnosis and therapy as a PDF, plus an information brochure for medical professionals.
  • The group says it works closely with the OERPE reference centre at MedUni Wien and aims to represent prion diseases in Pro Rare Austria.
  • CJDISA lists the group among its member associations, with no membership date.
  • OERPE and the relatives group organised an International CJD Awareness Day scientific conference in Vienna in November 2023.
  • A three-country conference of the German, Austrian and Swiss reference centres with patient and relatives groups took place in Goettingen on 19-20 June 2025.
  • A follow-up three-country conference, "Neue Perspektiven in der Forschung", is announced for 13-15 September 2026 at Europahaus Wien; the organiser is not named on the page.
  • The statutes page links a statutes PDF and a 2025 association register extract; their text was not read, so legal form and name are unconfirmed.
  • The news page relays papers, the Prion 2024 conference report and a link to a therapy study registered as NCT07444580, undated and not checked here.

Timeline

  1. 2023International CJD Awareness Day scientific conference in Vienna, organised by OERPE with the relatives group.
  2. 2025Three-country prion conference in Goettingen (19-20 June).
  3. 2025Statutes file dated 22 September 2025 appears on the site, inferred from the file name.
  4. 2026Three-country conference planned at Europahaus Wien (13-15 September).
  5. 2026Online relatives meeting on 16 October, with further dates in November and December.

Last checked 1 November 2026

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