National document on rare diseases drafted

March 3, 2019

TEHRAN – A comprehensive document on rare diseases has been drafted in a collaborative initiative between the Ministry of Health and NGOs active in this field, head of the transplantation and treatment of diseases department at the Ministry of Health has announced.

The document’s main purpose is to have a comprehensive source of information to identify all kinds special and rare diseases, along with offering the most efficient ways of support for the patients, IRNA quoted Mehdi Shadnoosh as saying on Friday.

Although, rare disease plans and programs have been underway in the country since past years, it is essential to have a comprehensive document to reach a common approach acceptable in international level, he stated.

The Ministry took steps toward drafting the document in cooperation with the NGOs active in this field, and it is scheduled to fully prepare the document during the next year, he said.

He went on to say that among rare diseases identified worldwide, 280 are common in Iran.

To raise awareness about the diseases and observe the rare disease day, the 10th international rare diseases congress will be held in Tehran on March, 2, with a theme of ‘’RARE but not ALONE!’’ in order to support patients suffering rare diseases as well as presenting latest scientific and social achievements in this regard, he noted.

Rare Disease Day takes place annually on February 28 worldwide, aiming to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

He further concluded that we hope that the next year’s budget suffices the rare diseases costs and supports the patients more than before.

According to WHO, rare diseases are often serious, chronic and life-threatening. The European Union (EU) definition of a rare disease is one that affects fewer than 5 in 10,000 people. At present, more than 6000 rare diseases are known; around 80 percent of them are genetic disorders and half of them occur during childhood. 

Grouped together, rare diseases affect 6–8 percent (or about 30 million people) out of the 508 million population of EU countries. This roughly equals the estimated prevalence of diabetes in the World Health Organization European Region, which in 2013 was 6.8 percent of 658.7 million adults in the 20 to 79-year age group.

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.

FB/MG

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