The Generative Brain

Associazione Italiana Encefalopatie da Prioni (AIEnP)

AIEnP is an Italian non-profit association (ONLUS) for families of people with human prion diseases, registered in Rome under codice fiscale 97481260582. A representative told the Italian neurology society in 2010 that it was started in 2007 by people whose relatives had been diagnosed with prion disease. Its documented activity is a series of free meetings that bring families and care staff together with Italian and international prion experts, held in Milan (2010), Bergamo (2017 and 2018) and Rome (2019), plus advocacy for national rare disease recognition and a family voice at the PRION 2014 public session in Trieste. The ISS national CJD registry lists it as the Italian prion disease association on its links page. Its own website could not be opened and no activity after November 2019 was found, so current status is unknown.

Key facts

  • AIEnP uses the legal label ONLUS and codice fiscale 97481260582 on its letterhead; the registered seat was Via Paolo Di Dono 131, Rome in 2010 and Via Antonio Vivaldi 8, Rome in 2017 and 2018.
  • An AIEnP representative told the SIN board in March 2010 that the association began in 2007, founded by people with relatives diagnosed with prion disease.
  • At the same meeting AIEnP said it had asked the Ministry of Health and the Istituto Superiore di Sanita to recognise the disease as rare nationally, to ease and cheapen access to care, and described care as mostly inadequate outside a few local services.
  • The second Italian family day, on 4 December 2010 at the Mario Negri institute in Milan, had talks by Robert Will, Pierluigi Gambetti, Inga Zerr, Fabrizio Tagliavini, Maurizio Pocchiari, Gianluigi Forloni (on the doxycycline trial in CJD) and Richard Knight, then a round table among families.
  • Its family meetings are free and open to relatives of people with prion disease and to the health and social care staff who look after them.
  • The May 2017 Bergamo meeting covered a research update, the legal rules on autopsy, psychological support with attention to genetic forms and care pathways, with Carlo Besta neuropathology staff as speakers and collaborators.
  • In November 2018 AIEnP ran a joint meeting in Bergamo with the local section of the Italian Parkinson patients association on shared mechanisms and managing behaviour and mood symptoms.
  • The November 2019 Rome meeting, under the patronage of Fondazione Telethon, included epidemiology from the ISS registry (Anna Ladogana), a welcome from Maurizio Pocchiari and a talk on psychological counselling in genetic testing for prion disease.
  • The vice president of AIEnP spoke at the public session of the PRION 2014 congress in Trieste on 26 May 2014, alongside ISS and veterinary TSE reference centre scientists.
  • The ISS national CJD registry links page, last modified February 2026, lists AIEnP as the Italian prion disease association; it is a link, not a statement of formal partnership.

Timeline

  1. 2007Association started by relatives of people with prion disease, per a 2010 statement.
  2. 2010AIEnP presents to the SIN board session with patient associations and reports its request for national rare disease recognition.
  3. 2010Second Italian family day on prion diseases at the Mario Negri institute, Milan.
  4. 2014AIEnP vice president speaks at the PRION 2014 public session in Trieste.
  5. 2017Third family meeting in Bergamo with Carlo Besta speakers.
  6. 2018Joint meeting with the Bergamo Parkinson association.
  7. 2019Meeting with the experts for relatives in Rome, with ISS speakers and Telethon patronage.
  8. 2025Family meeting with the Istituto Mario Negri planned in Milan, with Telethon, AFIFF and Associazione Nuti Luca Onlus patronage (draft programme; not confirmed as held).
  9. 2026ISS registry links page, still listing AIEnP, last modified.
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