‘About 300 types of rare diseases diagnosed in Iran’

June 9, 2019 - 20:58

TEHRAN – A total of 300 types of rare diseases have been diagnosed in Iran, the Rare Diseases Foundation of Iran director said.

Hamidreza Adraki said that rare disease or disorder is defined as rare when it affects 2 in 10,000 people.

The foundation plans for screening programs according to the statistics, he said.

Genetic disorder is the most important reason for rare disease in Iran, which is caused by the cousin marriage, he said.

He pointed to fetal MRI at 4 months as a screening stage in rare diseases, although it can be done after birth, he explained.

Rare diseases are often serious, chronic and life-threatening. At present, more than 6000 rare diseases are known; around 80% of them are genetic disorders and half of them occur during childhood.

Rare diseases are associated with a high psychological burden for the patient but they can also have a major impact on a patient’s family. In addition to the health burden on patients, few of these diseases have an effective drug treatment available. This is because the drugs to treat rare diseases (called orphan drugs) are not commercially viable for pharmaceutical companies, due to the small number of patients per disease.


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