rare diseases

Total:15

  • EURORDIS praises Iran’s national document on rare diseases 2021-03-02 16:32

    EURORDIS praises Iran’s national document on rare diseases

    TEHRAN – Yann Le Cam, the chief executive officer of the European Organization for Rare Diseases (EURORDIS), has praised Iran for preparing a national document on rare diseases, saying that it will change the lives of one million rare disease patients in the country.

  • Rare Diseases Document awaiting government approval 2021-02-15 17:37

    Rare Diseases Document awaiting government approval

    TEHRAN – The National Document on Rare Diseases, recently approved by the Ministry of Health, is being studied by the cabinet of ministers for final approval, Hamidreza Edraki, CEO of the Rare Diseases Foundation of Iran, has announced.

  • National day for rare diseases proposed 2021-01-18 18:31

    National day for rare diseases proposed

    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.

  • بیماری 2020-12-28 18:16

    National Document on Rare Diseases approved

    TEHRAN – The National Document on Rare Diseases has been approved with the aim of preventing the birth of infants with rare diseases, medical and therapeutic problems.

  • Some $280m spent annually on rare diseases treatment 2020-06-23 18:13

    Some $280m spent annually on rare diseases treatment

    TEHRAN – The Iranian government spends a total of 12 trillion rials (nearly $280 million at an official rate of 42,000 rials) to provide medical treatment and pharmaceutical services to the patients suffering from rare diseases, Mehdi Shadnoush, head of the Health Ministry's center for transplantation and disease management, has announced.

  • Health ministry pursuing to provide medicine for SMA patients 2020-01-04 18:28

    Health ministry pursuing to provide medicine for SMA patients

    TEHRAN – The Ministry of Health is trying to provide medicines for patients with spinal muscular atrophy (SMA) and other rare diseases, IRIB news agency reported on Friday.

  • rare disease 2019-06-09 20:58

    ‘About 300 types of rare diseases diagnosed in Iran’

    TEHRAN – A total of 300 types of rare diseases have been diagnosed in Iran, the Rare Diseases Foundation of Iran director said.

  • rare diseases 2019-05-13 20:00

    292 rare diseases identified in Iran

    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.

  • Iran to set up drugstore for rare disease patients 2019-05-10 20:10

    Iran to set up drugstore for rare disease patients

    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.

  • National document on rare diseases to be drafted 2019-04-08 09:14

    National document on rare diseases to be drafted

    TEHRAN — At numerous requests put in by patients suffering from rare diseases Iranian Health Minister Saeed Namaki has tasked Tehran University of Medical Sciences with devising a national document on rare diseases, Fars news agency reported on Sunday.

  • National document on rare diseases drafted 2019-03-03 14:44

    National document on rare diseases drafted

    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.

  • Budget for rare diseases projected to rise by 70% 2018-12-31 21:46

    Budget for rare diseases projected to rise by 70%

    TEHRAN — The budget proposed for treatment of rare diseases will rise by 70 percent for the next fiscal year (starting on March 21), Budget and Planning Organization announced in a statement, ISNA news agency reported on Monday. 

  • Govt. should pay special attention to MPS, SMA: deputy health minister 2018-11-13 22:13

    Govt. should pay special attention to MPS, SMA: deputy health minister

    TEHRAN — Mucopolysaccharide (MPS) and spinal muscular atrophy (SMA) are special life-limiting diseases which require special attention from the government, the deputy health minister Qasem Janbabaei has said.

  • Free screening tests, healthcare services for MPS disorder 2018-10-12 20:23

    Free screening tests, healthcare services for MPS disorder

    TEHRAN —Iran’s Ministry of Health has planned on performing screening test for mucopolysaccharidoses (MPS) to provide the patients with free of charge healthcare services, ISNA reported on Friday.

  • Rare Diseases Day 2018-03-04 12:35

    Iranian celebs named ambassadors of rare diseases foundation

    TEHRAN – The Rare Diseases Foundation of Iran chose some well-known national athletes and artists as the ambassadors of rare diseases to raise public awareness about the least prevalent illnesses.