1 * Hamid Reza Edraki and 2 Safora Ghazimorad
1
Neuroradiologist (LMU Munich -Germany), Faculty
member of Shahid Beheshti University of Medical Sciences,
Tehran, Iran.
2
Master’s degree in psychology, a member of the Iranian
Psychological System Organization, a member of the Iranian Neuropsychological Association and APA,
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
Production of rare drugs in Iran
The statistics of the nine months of 1401 in the pharmaceutical system of the country show that some manufacturers that produce drugs in our country has included a number of drugs related to rare diseases in their production inventory. Among them, the following drugs can be mentioned:
1- Anakinra INJECTION, SOLUTION 100mg/0.67 ml (Persisgen)
2- Bevacizumab INJECTION, SOLUTION, CONCENTRATE 25 mg/ml (Aryogen – Acteropharma)
3- Biotin TABLET 5 mg (Iran darou – Aburaihan- jalinous – rahapharm – Oxin)
4- Biotin AMP 5 mg (actover co- darou pakhsh- exir co- pbjpharma- Oxin- Aburaihan- Tadbir kala- alborz)
5- Bortezomib INJECTION, POWDER, LYOPHILIZED 3.5mg (Nano alvand-
Sobhan darou- ACTe-HRJOBBOFFER– Rooyan Darou- nanocedaL CO)
6- Cladribine INJECTION, SOLUTION 1mg/ml (Nano alvand)
7- Cladribine INJECTION, SOLUTION 2 mg/ml (Nano alvand)
8- Brimonidine Tartrate SOLUTION DROPS 0.2% (Sina darou- Darou pakhsh)
9- Factor VII VIAL 4.8 mg (Aryogen pharmed)
10- Factor VIIa INJECTION, POWDER, LYOPHILIZED 1.2 mg (Aryogen pharmed)
11- Nitisinone CAPSULE 5 mg (osvepharma)
12- Miglustat CAPSULE 100 mg (Modavapharma- faranshimi)
13- Nitisinone CAPSULE 10 mg (osvepharma)
14- Idarubicin HCl INJECTION, SOLUTION- 1mg/ml(Nano alvand)
15- Pilocarpine Nitrate SOLUTION/ DROPS 0.04 (Sina darou- Bbpharmaco)
16- Pirfenidone TABLET 200 mg (Darou darman arang- Mahban group- Modava pharma)
17- Silver Sulfadiazine CREAM 10 mg/g 50 g (Sobhan darou)
18- Sapropterin DiHCl SOLUBLE TABLET 100 mg (Modava pharma)
19- Silver Sulfadiazine CREAM 1% 50g (Iran najo- Sina darou- Emad darman pars- Behvazan darou- Sobhan darou- Iran avand far)
20- Rifampicin CAPSULE 300 mg (Hakim pharm)
21- Sodium Benzoate TABLET 500 mg (Amin pharma)
22- Trientine DiHCl CAPSULE 300 – 250 mg (Zist darou- nanoproduct)
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
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.
Researchers find new genetic disease
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.
RADOIR Appreciated IUMS As Its Collaborative Partner
IUMS was appreciated for its collaboration in organizing RADOIR’s scientific seminar at the 10th International Congress on the Occasion of Rare Disease Day.
New Horizons of Hope through Rare Diseases Strategic Plans
RADOIR 10th Rare Disease Day with the theme, “Rare but Not Alone!” was held in March 2nd, 2019 at International Razi Conference Center (IRCC).