Groups of patients, researchers and health organizations in the United States will celebrate next week a day for raising awareness about rare diseases that affect some 250 million people around the world.
The U.S. Food and Drug Administration will join forces with the European patients alliance EURORDIS on Rare Disease Day 2011, the fourth international edition of a day dedicated to considering what to do about these illnesses.
This year Rare Disease Day, set for Monday, will denounce the disparities of access to medical services and treatment that people with these ailments suffer.
The FDA says that some 7,000 rare diseases have been identified around the world, though only 1,100 are included in the International Classification of Diseases, which makes their diagnosis difficult.
Each case is a unique problem and it could be that there are little or no resources for treating it. It is estimated that close to 80 percent of rare diseases are genetic in origin and about half of them affect children.
The definition of a rare disease is not the same around the world.
In Europe a disease is considered rare if it affects one person out of every 2,000 inhabitants, is characterized by being highly disabling, having no known medical treatment and the diagnosis is made on an average of 10 years after the symptoms are first noticed.
In the United States, rare diseases include those that affect less then 200,000 people. In this country some 30 million are affected by one of these diseases.
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