TEHRAN – The budget allocated to support patients with rare diseases has increased by 40 percent.

A sum of 50 trillion rials (about $100 million) was allocated in the past Iranian calendar year that ended on March 20, IRNA reported, adding that the figure rose to 70 trillion rials this year.

According to the statistics published in 2019, the number of rare diseases identified in Iran has reached 332 types of diseases, and about 4,750 people are covered by the Rare Diseases Foundation of Iran.

Out of a thousand population, 2 people get a rare disease, while the prevalence can be curbed by changing people’s culture, screening, identifying, preventing births, and raising awareness.

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 effective drug treatment available.

President Ebrahim Raisi has instructed all government organizations to implement the National Document on Rare Diseases.

The National Document on Rare Diseases was approved in December 2020, with the aim of preventing the birth of infants with rare diseases and therapeutic problems.

Patients with rare diseases launched and signed a petition calling for drawing up a national document on rare diseases on the occasion of Rare Disease Day, February 28, 2019.

The main vision of this document is to prevent the birth of infants with rare diseases and to solve the medical and therapeutic problems of rare patients in the country.

There are 355 types of rare diseases in Iran. Also, according to the World Health Organization, there are nearly 8,000 types of rare diseases in the world.

A total of 107 hard-to-treat diseases are currently under health insurance coverage, Mohammad-Mehdi Nasehi, the managing director of Iran Health Insurance Organization, has said.

He made the remarks in a meeting with Ahmed al-Mandhari, the World Health Organization director for Eastern Mediterranean Region, IRNA reported.

Some 20 million people in villages across the country are covered by the Health Insurance Fund and the government pays most of the treatment costs, Nasehi added.

A total of 250 trillion rials (around $500 million) was proposed in the budget bill for the previous Iranian calendar year that ended on March 20 to support and treat patients with hard-to-treat diseases.

Out of a thousand population, 2 people get a rare disease, while the prevalence can be curbed by changing people’s culture, screening, identifying, preventing births, and raising awareness.

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.

MG