The Princess of Asturias, HRH Letizia Ortiz attend next Friday Totana City will host from 18 to 20 October, the VI National Congress of Rare Diseases, and which also marks the I Iberoamerican Meeting on this matter, which will take place from 14 to 18 of this month and which will bring together representatives of 11 Latin American countries.
The Mayor of Totana, Isabel Maria Sanchez, President of ERDF, Juan Carrion, and responsible for "D'Genes", Naca Eulalia Pérez de Tudela, today introduced the program of activities, which aims to raise awareness about the importance of this type of pathology.
The meeting, attended by more than 30 speakers and is organized by the Spanish Federation for Rare Diseases (ERDF) and the Association "D'Genes", respectively, host to numerous families affected and associations as well as leading experts in the matter from the point of view of science, medical care and training.
With this sixth edition, the organization aims to standardize and raise awareness on the situation of people with rare diseases; torque that is host to numerous families affected with rare diseases as well as leading experts in the matter.
Moreover, there will be a table of rare diseases testimonies, moderated by the President of D'Genes, in which four people will speak about their experiences.
In addition, the Mutual Aid Group "Hidden Roles" of the delegation ERDF Extremadura held a theatrical performance.
The organizers thanked all associations, institutions and organizations that have made possible, once again, to take place this Congress, which they said, "is a meeting point for families of people affected by rare diseases" .
They also called for all patients and their families to attend the Sixth Congress, a place to share concerns and experiences with people who are in a similar situation.
The inaugural conference will be borne by Teresa Pampols, Senior Consultant, Section of Inborn Errors of Metabolism Department of Biochemistry and Molecular Genetics, Hospital Clínic - IDIBAPS of Barcelona, â€‹â€‹who will speak on "Databases clinical laboratory diagnosis of diseases rare and valuable information tool for all involved. "
Moreover, the image of rare diseases in the Spanish media will be addressed by experts like Antonio and Juan Manuel Arcos Bañón, University of Almería, Josep Solves, Cardenal Herrera University, and Sebastian Sanchez of the University of Seville .
Among the presentations will be offered, include those developed under the title "Bringing the lab to the street" in which topics such as the work of a molecular biologist, genetic and acquired lipodystrophy, or orphan drugs.
In addition, during the Sixth National Congress will be held Lipodystrophies I International Symposium.