Fundacion de Enfermedades Neurodegenerativas (FEN), Concepcion, Chile

FEN is a nonprofit foundation in Concepcion, Biobio Region, Chile, that offers free orientation, psychological support and caregiver accompaniment to adults with neurodegenerative disease and their families. It says it was founded in 2014, and the CJD International Support Alliance directory independently lists it as established that year to support affected families. Its prion role is family support and information: it publishes a 23-chapter Spanish-language CJD family guide (2026 edition), offers a newsletter topic on CJD and other prion diseases, and describes itself as the only Chilean member of CJDISA. It states it does not yet provide clinical care. Verification is thin: only FEN's own pages and the CJDISA directory were found, with no third-party coverage. Information only, not medical advice.

Key facts

  • FEN is a Chilean nonprofit based in Concepcion, Biobio, covering neurodegenerative disease broadly, with Alzheimer and Creutzfeldt-Jakob manuals on its site.
  • Its stated mission is orientation, prevention, diagnosis, treatment and research for adults, families and the community; today it delivers free orientation, psychological and caregiver support and legal orientation.
  • It states that it does not yet give clinical care or medical consultations.
  • A founder and president is named publicly on the foundation's site, and the CJDISA directory lists the same person as CEO (name left out of this entry).
  • It says it was founded in 2014 in Concepcion as a nonprofit legal entity, with Health, Scientific and Legal departments and 27 expert collaborators (12 in Chile, 15 abroad from 8 countries).
  • CJDISA's directory lists FEN as established in 2014 to support families affected by prion disease, giving an independent check of the founding year.
  • FEN says it is the only Chilean organisation in CJDISA; its own pages give differing alliance sizes (18 countries and 20 patient organisations, versus more than 25 organisations).
  • FEN lists A.I.En.P. (Italy), the CJD Foundation (USA), the Australian CJD support network and Universitatsmedizin Goettingen among international partners.
  • Its 2026 CJD guide (23 chapters, authored by the foundation, legal citations checked on 1 October 2026) covers the disease forms, diagnostic tests and Chilean health-system and legal routes.
  • The guide states that Chilean CJD mortality for 2021 to 2024 was 5.73 per million, that cases must be notified within 24 hours through EPIVIGILA, and that RT-QuIC is not performed in Chile, with samples sent mainly to Mayo Clinic and the NPDPSC in Cleveland. These are FEN's statements and are unverified here.
  • Planned development is a Regional Care Center in Biobio (in formulation for FNDR funding), telemedicine equipment, and a National Brain Institute.

Timeline

  1. 2014FEN founded in Concepcion (self-reported; matched by the CJDISA directory).
  2. 2014FEN's founder is invited to present the foundation for Chile at the PRION congress in Trieste (self-reported).
  3. 2025PRION 2025 held 3 to 7 November in Armacao dos Buzios, Brazil, named on FEN's international page.

Last checked 1 November 2026

Sources for this page