07 Oct2017
The achievements of Barcelona meeting
“We entered international arena with the slogan of “Rare Disease Patient without Border” to communicate developed research organizations and large pharmaceutical companies, in order to convince their presidents to cooperate in transferring medicine and treatment for Rare Disease Patients.” Says Dr. Davoudian.
27 Sep2017
25th Workshop of the EURORDIS Round Table of Companies (ERTC)
Dr. Ali Davoudian accompanied by scientific representatives from Rare Diseases Foundation of Iran participated at 25th Eurordis Round Table Companies workshop which had held on 26th of September 2017, in Barcelona.
16 Sep2017
Meeting between Dr. Davoudian and his counterparts at the ICORD 2017, in China
Dr. Ali Davoudian, the Managing Director of the Rare Diseases Foundation of Iran, met other countries’ Patient Organizations leaders at the 12th annual ICORD Conference and 6th China Rare Disease Summit held in Beijing, on 7th Sep 2017.
10 Sep2017
A rare look
The following booklet is to explain our awards, activities and etc in the last 12 years of rare diseases foundation of Iran.
10 Sep2017
Safir Salamat
After successful publication of the “Nedaye Nader (Voice of Rare) ” specialized magazine with the rare diseases as its main theme the Foundation, in line with its social mandate in promoting the health quality in different social communities, attempted to publish the “Safire Salamat ) Messenger of Health)” monthly magazine.
10 Sep2017
Atlas of rare diseases
Low prevalence of rare diseases has caused very limited studies done in this area. On the other hand the hereditary nature of these diseases has added more difficulties and complexity lowering the pace for identification of their causes and roots and accordingly their diagnosis and treatment.
10 Sep2017
Voice of 12000 patients with rare diseases
Translation and publication of the voice of 12000 patients with rare diseases in 10000 copies in cooperation with the ECO.
06 Sep2017
4 year-old child joined Rare Diseases Foundation of Iran
Narges was born with a congenital disorder, her spine and neck vertebrae had been sticking.
At first, there was just a limitation in moving her neck, it means she couldn’t move her head up or down and left or right. When she grows up, her waist gets the curved shape and it gradually gets worse.
20 Aug2017
The license for psychological and counseling center for rare diseases patients
The license for psychological and counseling center for rare diseases patients has been issued recently.
The Psychological and Counseling Organization of the Islamic Republic of Iran (PCO) issued a license for the establishment of a psychological and counseling center for Rare Diseases Foundation of Iran.