rare diseases

Total:16

  • $156m allocated to patients with rare diseases Yesterday 16:31

    $156m allocated to patients with rare diseases

    TEHRAN – The Majlis (Iranian Parliament) has approved a total of 50 trillion rials (about $156m) for the treatment of patients with rare diseases, Health Minister Bahram Einollahi has stated.

  • Some $943m proposed for hard-to-treat diseases 2022-02-12 18:27

    Some $943m proposed for hard-to-treat diseases

    TEHRAN – A total of 250 trillion rials (around $943 million) has been proposed in the budget bill for the next year (starting March 21) to support and treat patients with hard-to-treat diseases, IRIB reported on Saturday.

  • Rare Diseases Document goes into effect 2021-08-01 16:54

    Rare Diseases Document goes into effect

    TEHRAN – President Hassan Rouhani issued a decree on Sunday, according to which the National Document on Rare Diseases has officially taken effect, IRNA reported on Sunday.

  • National day for rare diseases approved 2021-05-29 16:58

    National day for rare diseases approved

    TEHRAN – The eighth day of Esfand (the last Iranian calendar month) which falls on February 26 has been approved to be designated as the national day of rare diseases in the national calendar, ISNA news agency reported on Saturday.

  • Some 70,000 rare disease patients vaccinated against coronavirus 2021-05-23 20:00

    Some 70,000 rare disease patients vaccinated against coronavirus

    TEHRAN – Some 70,000 patients of rare diseases have received the COVID-19 vaccine so far, Mehdi Shadnoush, head of the transplant management and treatment center of the Ministry of Health, has said.

  • COVID-19 vaccination should prioritize rare disease patients 2021-05-08 17:39

    By Faranak Bakhtiari

    COVID-19 vaccination should prioritize rare disease patients

    TEHRAN – Patients with rare and hard-to-treat diseases should be prioritized to be vaccinated against coronavirus, while more vulnerable patients are given a higher priority.

  • 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.