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On Monday February 29 World Rare Disease Day is commemorated, and special date the Center for Studies in Biolaw, Ethics and Health at the University of Murcia (CEBES), the Spanish Unit of the UNESCO Chair in Bioethics (Haifa ) and the Royal Academy of Medicine and Surgery of the Region of Murcia have organized a conference-debate under the title "the voice of the patient," addresses the ethical, legal and medical challenges of the current reality of rare diseases In our country.
The event will feature the intervention of Chicano Gema Herrero Saura and Faustino Huerta, and will be held on Monday, 29 February at the Conference Hall of the Faculty of Arts from 18:00.
Gema Chicano Saura speak on "Rare diseases today: an ethical and legal challenge."
Chicano is an inspector of the University of Murcia and president of the National Association of Ectodermal Dysplasia since 2004, his son suffers illness.
It is also representative of the Spanish Federation for Rare Diseases (FEDER) in the Board of EURORDIS, a non-governmental alliance representing 705 organizations of rare disease patients in 63 countries and covers more than 4,000 diseases.
Faustino Herrero Huerta will speak on "The Challenge of rare diseases in the field of medicine."
He is a Doctor of Medicine and Academician of the Royal Academy of Medicine and Surgery of the Region of Murcia.
The labyrinth of rare diseases
Before interventions a summary of the documentary "The Labyrinth of rare diseases" conducted by BELIEVING Center in collaboration with the research group Critical Communication Studies (ECCO) at the University of Almeria.
Full documentary:
https://www.youtube.com/watch?v=0Mvrx5xHLE8
Antonio M. Bañón explains in the documentary: "It is a little known disease many of the medical professionals, and many of those affected have no diagnosis."
"They continues- diseases that cause a high level of disability and which occur frequently in childhood".
According Bañón, the great challenge of these pathologies are the high mortality, low availability of medicines and heavy family burden to those around you.
World Rare Disease Day is celebrated on the last day of February and he tries to raise awareness about the existence of these rare to try to enhance the respective treatments diseases.
It is estimated that between 5,000 and 7,000 known rare diseases and about 4,000 of them have no curative treatments.
Source: UMU
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