TEHRAN- 292 rare diseases have been identified in Iran, among them the most common ones are dystrophy, neurofibromatosis, and Alopecia, also known as spot baldness, said the CEO of Rare Diseases Foundation of Iran.

“Currently, 3500 people with rare diseases have been identified in the country, but unfortunately we know that their number must be more than that, and we need to identify them,” ISNA reported Hamidreza Edraki as saying on Sunday. 

In May, Edraki had announced that with regard to the country’s population it is estimated that at least 50,000 to 60,000 patients are living with rear diseases nationwide.

According to Edraki, 85% of rare disease in Iran has a genetic basis, so it is necessary for couples to do screening test both before marriage and in prenatal stage. 

“The patients with rare diseases who are under our support need to do screening tests if they or their family are going to have children,” he added. 

According to Orphanet, rare diseases are diseases which affect a small number of people compared to the general population and specific issues are raised in relation to their rarity. In Europe, a disease is considered to be rare when it affects 1 person per 2000.

Early detection is the priority
“Early detection of rare disease is our top priority, and we actually aim to identify and treat them in children before they reach the school age,” Edraki further remarked. 

“For identifying the rare diseases we need a collective incentive in society, so focusing on educational system is really important here.” 

“We have had an agreement with the Ministry of Education about rare diseases, so that the health counselors in schools will be trained by us and can identify the students who have any type of rare diseases.”

“Currently, the university pharmacies supply the medication for such diseases, but we intend to collaborate with the Health Ministry and Food and Drug Organization, in order to open specialized pharmacies for rare diseases,” added Edraki. 

Edraki also noted that the national document on rare diseases is going to be ready soon. 

Drafting and completing the national document started since the beginning of the current Iranian calendar year (March 21) in a collaboration between Tehran University of Medical Sciences and Rare Diseases Foundation of Iran.

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

SJ/MQ/MG