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Fundacion Espanola de Enfermedades Prionicas (FEEP), Spain

FEEP is the Spanish national non-profit for people affected by prion diseases and their families. It started in May 2013 as the Asociacion Espanola de CJD and now operates as a foundation with its legal seat in San Sebastian de los Reyes, Madrid. It supports families (information, legal guidance, free psychological help, advice for relatives at risk of inherited forms), runs an annual convention in Madrid for families and professionals, and raises money through events for research grants focused on therapy. Its president is Joaquin Castilla, who directs the prion laboratory at CIC bioGUNE, and several of its grants went to anti-prion therapy projects of the type that laboratory works on. It hosted the November 2023 convention where ProFFIle researchers met patient groups including AFIFF, partnered the 2024 AFIFF ride that ended at CIC bioGUNE, and organised a 2026 Everest awareness trek with AFIFF. Researchers have recruited families and collected samples through it for Spanish and German studies.

Key facts

  • The organisation began in May 2013 as the Asociacion Espanola de CJD with 11 founders, modelled on the US CJD Foundation, and now operates as the Fundacion Espanola de Enfermedades Prionicas, a non-profit entity.
  • The legal notice gives tax id G67935684 and a registered address in San Sebastian de los Reyes (Madrid); the foundations registry number field is empty.
  • In April 2019 it still campaigned under the name Asociacion Espanola de Creutzfeldt-Jakob, in a Fundacion Atletico de Madrid backed run sponsorship drive to fund research grants.
  • Its stated lines of action include connecting affected people, awareness, dealing with public bodies on rights, family support during and after illness, professional psychological help and advice to relatives at risk of inherited prion disease.
  • It offers legal guidance pages (ELA law economic aid, dependency benefits, advance directives, tissue donation, palliative care) and a free psychological support service including a grief group.
  • Its research funding targets therapy; proposals from Spanish groups are accepted all year and judged by an expert committee on merit, impact and feasibility, and it says all money raised goes to research.
  • The official grants page lists five named grants from 2018 to 2021, including anti-prion compound screening, a porphyria metabolite as a possible therapy, and a dominant negative protein therapy design; amounts and host institutions are not given.
  • A February 2024 national press interview puts the research grants funded to date at more than 160,000 euros, raised from private donors, companies and events (press figure, not on the official site).
  • Joaquin Castilla, director of the CIC bioGUNE Prion Research Laboratory, is described by the US CJD Foundation as currently president of the Spanish Foundation for Prion Diseases, and by the Bizkaia technology park as its president.
  • It has held ten annual conventions for affected people and professionals in Madrid, from December 2015 to the tenth on 21 November 2026.
  • ProFFIle consortium researchers met patient associations, FEEP and AFIFF among them, at its seventh convention on 18 November 2023.
  • The 2024 AFIFF Treviso to Bilbao ride ended on 8 October 2024 with a joint FEEP and CIC bioGUNE awareness event at CIC bioGUNE in Derio.
  • In April 2026 it organised an Everest base camp awareness trek with AFIFF, represented by a CIC bioGUNE prion researcher and promoting the PRION 2026 congress in Verona.
  • A 2025 Basque study on the transmission of genetic prion disease recruited participants partly through the foundation, and a 2026 Goettingen tear fluid RT-QuIC study collected mutation carrier samples in collaboration with it; neither lists it as a funder.
  • It states membership of FEDER, the Spanish rare diseases federation, and close collaboration with the US CJD Foundation.

Timeline

  1. 2013Asociacion Espanola de CJD founded by 11 people.
  2. 2015First annual convention in Madrid.
  3. 2018First named research grants awarded (2018-2019 round).
  4. 2019Fundacion Atletico de Madrid backs a research fundraising campaign of the Asociacion Espanola de Creutzfeldt-Jakob.
  5. 2020Grant round 2020-2021 includes a dominant negative protein therapy project.
  6. 2023Seventh convention in Madrid, where ProFFIle researchers meet patient associations.
  7. 2024National press interview cites more than 160,000 euros in research grants.
  8. 2024AFIFF ride ends with a joint FEEP and CIC bioGUNE event in Derio.
  9. 2025Genetic prion transmission paper published, with recruitment partly through the foundation.
  10. 2026Goettingen tear fluid RT-QuIC paper published, with samples collected in collaboration with the foundation.
  11. 2026Everest base camp trek with AFIFF.
  12. 2026Tenth convention scheduled in Madrid.
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