C 036: IMPACT OF RARE DISEASES IN THE HEALTH POLICIES IN COUNTRIES UNDER DEVELOPMENT. EXPERIENCES AT LATIN-AMERICA AND CARIBBEAN

J Pharm Pharmacogn Res 2(Suppl. 1): S108, 2014

Special supplement with the abstract book of LATINFARMA 2013

Conference

C 036: IMPACT OF RARE DISEASES IN THE HEALTH POLICIES IN COUNTRIES UNDER DEVELOPMENT. EXPERIENCES AT LATIN-AMERICA AND CARIBBEAN (LA&C)

Llera VA.

ICORD/GEISER, Argentina.
Abstract

The inclusion of the Rare Diseases as a nosology within Public Health was an initiative from the affected citizens living in USA during the 70´s. Ten years after, in such country and in collaboration with public institutions, the first specific law was approved in 1983 (The Orphan Drug Act). The law defined the rare conditions and its treatments: the orphan drugs. After thirty years from this first step, the concept was reinforced in the developed world, and the R&D expansion and investment was six fold increased from basal, especially in the biotechnological area. Afterward LA&C was visualized handed by GEISER Foundation, starting at 2002. Following 8 years of lobbying national laws were incorporated at the official agenda of many LA&C countries. This new scenario in the region validates open debates that facilitate approaching and links in the region. The GEISER Foundation proposal is the translation of the technological management within the region in search of a rationale and a strong unified position, which in turn may provide accessible medical solutions for the people affected by the rare diseases.