Research and Health Care Policies
Equity of access to treatment
Access to Orphan Drugs
Legislations, Regulations and Policies
It is well known that approximately 80% of rare diseases are caused by a genetic alteration. The development of omic sciences, and in particular the development of genomics, is making it possible to discover the molecular origin of many diseases and determine effective diagnostic tests.
In this forum we will discuss the opportunities provided by individualized medicine and gene therapy for the diagnosis and treatment of these diseases, as well as policies in research, health care and financing of therapies in Rare Diseases.
To enlighten ourselves and discuss it, we have convened a select group of geneticists, researchers and clinicians, with managers and politicians to discuss the issues raised and provide solutions and proposals for action to those who have the capacity to approve them and put them into operation.
PresidentaDirector Ejecutivo