09 Sep2023
National Strategic Plan for Rare Diseases of Iran
The providing and editing of the national rare diseases document is one of the most vital activities of the Rare Diseases Foundation, and in this regard, the Rare Diseases Foundation of Iran, with a lot of endeavor and follow-up, and with the participation and cooperation of the professors and expertise of the Foundation and other universities of medical sciences, prepared and compiled the National Document of Rare Diseases of Iran, which after being approved by the Secretariat of the Supreme Council of Health and Food Safety and the cooperation and collaboration of the honorable officials of that ministry and other related institutions, was finally approved by the honorable president and announced. Undoubtedly, the declaration of this document can be a very huge and effective step in determining the duties of the institutions and beneficiaries related to these patients, providing services to rare patients and their families, and solving the problems of these patient respectfully
21 Aug2023
There are 63 service packages in the fund for rare and hard-to-treat patients
The deputy of insurance and services of the iran health insurance organization declared :we cover one million and thousand patients in the fund for rare and hard treatment diseases.
In report of mehr news agency ,Mehdi rezaei,
According the insurance coverage of rare and hard treatment patients, announce : 1,600 billion tomans have been paid in the first 4 months of this year to cover the costs of rare and hard treatment patients .
Most of services are provided in the pharmaceutical, medical radiation and laboratory services, 75% of which are related to the pharmaceutical sector .
Rezaei added: 63 service packages have been prepared in this fund for these patients, who have received the most services in the rare and hard treatment patients fund, respectively , for cancer , MS, AND HEMOPHILIA
01 Jan2020
RDI signs Memorandum of Understanding with the World Health Organization
RDI has signed a collaboration agreement with WHO to start the journey towards a global network of centers of excellence for rare diseases
28 Dec2019
“Fedratinib” Approved by FDA For Forms of “Myelofibrosis”
FDA approved “Fedratinib” (Inrebic) capsules for rare adult patients with special forms of Myelofibrosis.
28 Dec2019
Triple Therapy to Treat Cystic Fibrosis Approved by FDA
Trikafta (elexacaftor/ ivacaftir/tezacagtor) as the first triple combined therapy for CF mutation has been approved.
18 Mar2019
Discovering the First Common Risk Genes for Autism
Researchers at Danish Project iPSYCH & the Broad Institute in USA have found a common genetic risk for autism. The discovery means the determination of genes by separating the diagnosis groups and making more exact diagnoses will be accessible in the future.
18 Mar2019
Researchers find new genetic disease
A new genetic disease and a method for detecting more unexplained medical conditions have discovered by researchers at the Australian National University (ANU).
18 Mar2019
A Correlation Found Between Psychiatric Disorders And Events During The Prenatal Stage
A study carried out by iPSYCH shows that particular genetic variants in the human genome that are important for the development of the brain early in the life of the fetus are frequently found in psychiatric disorders.
08 Dec2018
Uncovered Key Immune Regular on The Trail of Rare Genetic Disease
Scientists at Scripps Research have found an important immune system-regulating protein in principle could be targeted to treat cancers and chronic viral infections.
The scientists, in a study published November 12 in Nature Chemical Biology, set out to determine the function of a protein, ABHD12, whose absence causes a rare genetic disease featuring a host of brain and nerve problems.