Dr. Cristina Skrypynk, chair of the Rare Disease Day Bahrain 2013 Organizing Committee, said, “The Al Jawhara Center for Molecular Medicine and Genetic Disorders, in collaboration with Primary and Secondary Care Departments from the Bahrain Ministry of Health, will host on Saturday, February 26, 2013 a scientific symposium. Also, a public awareness campaign for rare diseases will take place on Monday, February 28, 2013 at Seef Mall, in Manama.”
Dr Cristina mentioned, “Rare disorders are scientifically defined as diseases that affect one person out of every two thousand people, most of the diseases causes are genetic and ways of cure are unfortunately unknown. More than 100 million people are suffering from rare disorders all over the world. Studies have estimated that around 20 million people are suffering from rare disorders out of about 240 million Arab countries people from.”
So far, more than 700 genetic phenotypes or diseases have been recorded in the Arab population. The center of Arab Genomic Studies (CAGS) estimates that Arab countries spent about $30bn a year on their patients suffering from hereditary diseases. Most rare diseases are genetic, and thus are present throughout the person’s entire life, even if symptoms do not immediately appear.
Dr. Cristina added, “Spread of the phenomenon of consanguineous marriages in the Arab societies, aging parents and high birth rates in the same family, all contribute to the growing of rare disorders, and therefore the awareness of these consequences should be major goal of all interested people in health care.”
Furthermore, the International Day for Rare Disorders was organized for first time in 2008 by the European Organization of Rare Diseases (EURORDIS) and since then more than 1000 events have been organized around the world with the participation of hundreds of thousands people from 63 countries participated in 2012 campaign.
These campaigns have contributed to the development of national strategies and policies for rare diseases in a number of countries around the world. From the GCC countries, only UAE participated to the 2012 Rare Disease day event.
This year, the International Day for Rare Diseases is celebrated in the Kingdom of Bahrain throughout a symposium on the 26 of February and a public awareness campaign on the 28 of February. The events are organized by a team from Al Jawhara Center/Arabian Gulf University and from Bahrain Ministry of Health, primary and secondary care units.
Dr. Cristina said, “The main objective of this campaign lies in raising awareness among the public and decision-makers, researchers, and involve them in contributing to alleviate the suffering of these people affected by rare disorders, and the abolition of the borders between the various parties local and global in order to exchange experiences and collaborate in developing effective solutions for these chronic and severe diseases.”
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