TEHRAN — People suffering from rare diseases usually have problems finding their medications and it is planned to set up a drug store for them, CEO of Rare Diseases Foundation of Iran has said.

A rare disease, also referred to as an orphan disease, is any disorder that affects a small percentage of the population.

Final steps to launch the drugstore is being taken and it be up and running in no time soon, IRNA news agency quoted Hamidreza Edraki as saying on Thursday.

Iran’s Food and Drug Administration is also collaborating on setting up the drug store, Edraki highlighted.

He also noted that in a meeting with Iranian Health Minister Saeed Namaki it was scheduled to improve screening tests for rare diseases and register patients suffering the diseases.

Since the year 1388 (March 2009-March 2010) some 292 rare diseases are identified in the country, he said, adding that, the reason behind the high number of rare diseases is because of the high number of inter-family marriages in the country.

Genetic counselling and testing can improve the current conditions and decrease the number of children born with rare diseases, he suggested.

Moreover, running screening tests for rare diseases among the newly born babies can also improve their conditions by taking timely treatment measures, he highlighted.

Edraki went on to say that “we have also signed a memorandum of understanding with Ministry of Education so that teachers at elementary schools will be trained about rare disease and in case they observe any of the symptoms among the students they can report the at Rare Diseases Foundation website.”

Edraki also lamented that only 2,160 patients with rare diseases are registered at Rare Diseases Foundation website and that with regard to the country’s the population it is estimated that at least 50,000 to 60,000 patients are living with rear diseases nationwide.

He further explained that a disease or disorder is defined as rare in Iran when it affects fewer than one or two in 10,000.

In early April it was announced that at numerous requests put in by patients suffering from rare diseases Health Minister Namaki has tasked Tehran University of Medical Sciences with devising a national document on rare diseases.

Drawing up the plan would set the scene for providing patients with such diseases with better mental and physical care.

According to the Journal of Rare Disorders: Diagnosis & Therapy the importance of rare diseases stem from the fact that in many cases rare diseases are so rare that an individual physician may have never seen a single patient with that disorder. As a consequence, in many of these cases there is insufficient treatment and by the time a diagnosis is made, it may be too late to help the patient.

The variability of presentation of these diseases makes it particularly difficult to recognize and diagnose. Furthermore, some of them may present with common symptoms that may be mistakenly attributed to a common disease. This leads to reduced awareness and a delayed diagnosis. The vast majority of rare diseases are genetically inherited and therefore lifelong.

MQ/MG