In 1989, the CEPARM submitted its first survey of cases to the I International Symposium on Amyloidosis held in Porto (Portugal). It was a study on the clinical characteristics of 127 patients, as well as on the geographic distribution of 22 families that maintained the clinical features of the disease as in the north of Portugal, from which they were mainly originated. From this event on, we started to realize the number of Brazilian cases, because until then there were only isolated reports.

In 1990, a new survey was submitted to the XIV Brazilian Congress of Neurology,which included data collected since 1984 from 191 patients from the HUCFF-UFRJ, that belonged to 35 different families originated from Portugal. Again, the clinical characteristics observed were similar to the original Portuguese population affected, despite the huge miscegenation occured in Brazil. Both the age of onset, around 30-40 years, and the evolution of the disease were very alike.