frequent questions
What are rare diseases?
They are those that affect a limited number of people and are mostly of genetic origin, chronic, degenerative and, in many cases, can cause some type of disability.
According to National Law 26,689 and our Provincial Law 1944-G (Before Law 6814) they define them as those whose prevalence in the population is equal to or less than one in two thousand (1 in 2000) and despite their low prevalence in the population, They present a diagnostic, therapeutic and rehabilitation complexity, which implies an availability of inaccessible resources for patients and their families.
Is there a registry of rare diseases?
While it is not in effective operation, the province of the Chaco has Law 1945-G (Before Law 6815) that creates the "Disease Registry Orphan" which aims to fulfill the information needs that enable knowledge the incidence, prevalence, survival and all those aspects related to people diagnosed or treated by an EPOF.
What are the characteristics
of rare diseases?
In the vast majority of cases there is a late diagnosis, lack of information and scientific knowledge about them, lack of professionals and specialized centers, combined with the difficulties in access to treatment, generate a very adverse context which the patient and his family must cope every day.