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:Fatal Familial Insomnia Families Association - Prion Disease: PDF Stampa E-mail

On the 7th January 2003 a non-profit-making association was founded in Treviso (Italy) entitled: “FATAL FAMILIAL INSOMNIA FAMILIES ASSOCIATION - PRION DISEASES”

The aims of the Association are:

  1. To promote research by the raising of funds to be allotted to those persons who, subject to official notification, present projects for the study of these diseases and their prevention and/or cure. The research funds will be allotted following a strict selection criteria overseen by a competent medical-scientific committee and through peer-review, the only internationally recognized system for research project evaluation.
  2. To publicize these diseases with up-to-date studies and research results.
  3. To encourage other families in some way involved from all over the world to participate in the Association.
  4. To support the victims and their families.


Prion diseases are very rare, but on the increase after the discovery of BSE and its human variant. These diseases are invariably fatal, causing the majority of victims to fall ill in middle-age. The diseases can be:

  • Genetic or familial
  • Isolated cases
  • Acquired as a result of transplants, infected medical supplies or through the food chain.

Up to the present moment, no known cure or preventive medical treatment exists. These diseases develop when a protein normally present in our organism – the prion protein – mutates and accumulates in the brain causing a rare class of degenerative brain ailment. The causes can be genetic or occur by pure accident. There exists, however, acquired forms of the disease where deviant prions enter the organism and convert normal prions into lethal ones, starting the degenerative process. There is mounting concern about the human form of the disease caused by the consumption of meat and derivatives from cattle with "mad cow disease". Such is the case of the new variant of Creutzfeldt-Jacob Disease, so called to differentiate it from isolated cases or genetic forms of the disease.

Classification of prion diseases

  • Creutzfeldt-Jacob Disease (CJD), familial, isolated cases, iatrogenic
  • Fatal Familial Insomnia (FFI), familial and isolated cases
  • Gerstmann-Straussler-Scheinker (GSS) familial
  • Kuru (historical interest only, caused by cannibalistic practices among the natives of the Fore Islands – New Guinea)
  • The new variant of Creutzfeldt-Jacob Disease (nvCJD), linked to BSE