National day for rare diseases proposed

January 18, 2021 - 18:31

TEHRAN – February 26 has been proposed to be designated as the national day of rare diseases in the Iranian official calendar, ILNA news agency reported on Monday.

Approved by the Public Culture Council, affiliated with the Ministry of Culture and Islamic Guidance, the proposal will be included in the official calendar of the country after the approval of the Supreme Council of the Cultural Revolution and the announcement of the presidency.

Rare Disease Day is internationally celebrated on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

The Rare Diseases Foundation of Iran has been celebrating this day since 2009 by holding international conferences with the participation of officials, artists, athletes and supporters, and ambassadors of rare diseases.

The proposal to nominate the National Day of Rare Diseases was also supported by the Ministries of Interior, Health, Welfare, and Education.

Naming the National Rare Diseases Day and introducing more of these diseases to the community can play an effective role in identifying and achieving more accurate statistics of these patients.

National Document on Rare Diseases

The National Document on Rare Diseases has been approved in December 2020, with the aim of preventing the birth of infants with rare diseases, medical 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 National Document on Rare Diseases, which was recently prepared in collaboration with the Rare Diseases Foundation and the University of Tehran and was drafted by prominent domestic and foreign experts.

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.

Rare diseases prevalence

Between 6,000 and 8,000 types of rare diseases have been registered worldwide, and in Iran, 344 types of rare diseases have been identified.

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 the 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 an effective drug treatment available.

FB/MG


 

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