Guadarrama hosts a national meeting of people suffering from Marfan syndrome
The meeting of patients with Marfan syndrome is held from February 1 to 4.
The Marfan Syndrome Association (SIMA) is organizing an annual meeting for people affected by Marfan Syndrome in its 21st edition. On this occasion there will be a celebration of events from 1 to 4 Februaryat the residence of Fray Luis de Leon, located in Guadarrama.
For almost two decades, meetings have been envisioned as a space for coexistence, where educational and entertaining activities are organized. They all help become a meeting place for victims and their families.
Presentations at the Mafan Syndrome Association meeting:
Dr. Alberto Forteza Gil, Head of the Department of Cardiovascular Surgery at the University Hospital of Puerta de Hierro (Madrid); and the Cardiac Surgery Department of the Quirón Salud University Hospital.
Dr. Juan Miguel Redondo MoyaResearcher, Department of Vascular Biology and Inflammation, Central Scientific Research Center.
Doctor Miguel Campanero Garcia, Researcher at the Center for Molecular Biology of Severo Ochoa.
Dr. Jorge Oller Pedrosa, Chief Scientist of the Health Research Institute of the Jiménez Díaz Foundation
Dr. Gustavo Egea, Professor at the Faculty of Medicine and Health Sciences of the University of Barcelona.
Game activities
In parallel with the conferences, there will be various recreational and coexistence activities organized for children and adolescents; They are mainly focused on creating space for knowledge, personal acceptance and acceptance of the disease.
Through all the activities that make up the programmes, SIMA strives to create a climate conducive to the exchange of experiences between survivors; at the same time, they allow us to better understand the reality of living with this pathology from different points of view.
About Marfan syndrome
He Marfan syndrome This is an inherited genetic change, a mutation located in the FBN1 gene on chromosome 15. It causes a disorder in the coding of a protein called fibrillin, which affects connective tissue.
Connective tissue is found throughout our body and serves as the “glue” of all cells, giving shape to our organs, muscles, blood vessels, etc.
It affects various systems to varying degrees, such as the cardiovascular, dilatational, musculoskeletal and ocular systems.
Like most rare diseases The origin of this syndrome is genetic and is transmitted to offspring in an autosomal dominant manner. With every pregnancy, there is a 50% chance that the unborn child will be born affected. Likewise, the prevalence of this rare disease is estimated at 1 per 5,000 inhabitants.