The Generative Brain

AFIFF Associazione Familiari Insonnia Familiare Fatale ODV (Treviso)

AFIFF is a volunteer organisation (ODV) of families affected by fatal familial insomnia, based at the Treviso hospital in Veneto, Italy, founded in 2002 or 2003 by a Treviso hospital physician. It is not the sponsor of the doxycycline prevention trial: both registries name the Istituto di Ricerche Farmacologiche Mario Negri as sponsor and Fondazione Telethon as funder. AFIFF's documented role is as the organised family partner. It approached scientists, shaped the trial design (including the choice not to tell participants their genotype), was the community from which participants came, provided samples and historical data, and took part in the psychological support programme and update meetings. It now runs awareness and fundraising events, works with the European ProFFIle consortium and the Spanish prion foundation, and in 2026 is co-funding a Mario Negri biobank of samples from people at risk.

Key facts

  • The official name is Associazione Familiari Insonnia Familiare Fatale, Malattie da Prioni, a volunteer organisation (ODV) with its seat at the Treviso hospital; the official site gives codice fiscale 94090680268 for the 5x1000 tax allocation.
  • The official page dates the founding to 7 January 2003 in Treviso, by the hospital physician Benedetto Ignazio Roiter, who brought the affected families together; the 2022 Prion paper gives 2002.
  • Its four stated aims are spreading knowledge of prion diseases and FFI research, bringing together FFI families in Italy and abroad, supporting patients and families, and contributing to research.
  • Both trial registries name Mario Negri as sponsor and Telethon as funder or collaborator; neither lists AFIFF in any sponsor, collaborator or support field.
  • The 2022 Prion paper describes how association members contacted scientists in 2003, provided biological material and historical data, and discussed the practical design of the doxycycline trial with the researchers; the participants' wish not to know their genotype shaped the blinded design.
  • The 2015 Prion paper thanks AFIFF members, saying the study would have been impossible without them, and describes the trial group as part of a large Italian FFI family organised in an association.
  • AFIFF members are co-authors with Mario Negri, Treviso hospital, Carlo Besta and Telethon staff on the 2022 Prion paper, whose work was funded by four Telethon grants.
  • A Telethon funded psychological support programme for trial participants and families began in 2013 and was run together with the association, alongside regular update meetings with researchers.
  • Telethon credits the founder, described in 2024 as former president, with helping to conceive and coordinate the Doxiff study with Mario Negri and Besta researchers.
  • The scientific committee on the official site has six members, including Gianluigi Forloni and Roberto Chiesa of Mario Negri, Fabio Moda of Carlo Besta and Emiliano Biasini of the University of Trento.
  • AFIFF is named as a collaborating association of ProFFIle, a JPND funded consortium coordinated by the Istituto Mario Negri, with CIC bioGUNE among the partners, that seeks early detection biomarkers for FFI.
  • In 2026 AFIFF supports a three-year Mario Negri biobank project with the Treviso hospital, giving 8,500 euro for enrolment, follow-up, staff and sample storage.
  • The official site claims more than 1 million euros invested in FFI research and lists Telethon, the Spanish prion foundation, Mario Negri and ProFFIle as partners.
  • The web address in the 2022 paper (afiff.net) now redirects to a domain for sale page; the current site is afiff.charity, with an official contact form.

Timeline

  1. 2002Association created, per the 2022 Prion paper.
  2. 2003Members and their physicians approach scientists to start joint research.
  3. 2003Founding date in Treviso given on the official page.
  4. 2010Grant application for the prevention trial submitted to Fondazione Telethon and funded.
  5. 2011Doxycycline prevention trial starts, sponsored by Mario Negri.
  6. 2013Enrolment closes; psychological support programme starts with the association.
  7. 2015Prion paper on the trial thanks AFIFF members.
  8. 2018Rare disease press profile calls AFIFF an active partner in the trial.
  9. 2022Prion paper co-authored with AFIFF members published.
  10. 2023AFIFF meets ProFFIle researchers at the FEEP annual convention in Spain.
  11. 20242000 km fundraising cycle ride from Treviso to Bilbao with Telethon and FEEP as partners.
  12. 2024The ride ends with an awareness event at CIC bioGUNE.
  13. 2024Trial completion date in both registries; no results posted.
  14. 2026Everest Base Camp awareness trek promoting the PRION 2026 meeting.
  15. 2026Biobank project with Mario Negri announced on the official site.
  16. 2026Press report of the 8,500 euro AFIFF donation to the Mario Negri and Treviso biobank.
Sources for this page