aim to act as an international group, supporting, informing and networking with anyone affected by a rare chromosome disorder or an autosomal dominant single gene disorder and with any interested professionals.
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
04 Nov2018
SABNA- Registry system for Iranian Rare Patients
Description of the project
Healthcare is an important part of human life. Providing the best medical facilities for people with rare diseases is an integral part of today’s society. Thus, RADOIR designed an automatic system for Patients’ registry. The main goal is to establish an integrated system without paper works and with access to all sections; medical services, research and development, pharmaceutical, associations and other affiliated centers to provide better services for rare patients.
06 Aug2018
RADOIR 2019 National Contest
RADOIR 2019 National Contest to Hunt The Best Rare Motto !
2019 Marks the 10th “Rare Disease Day” Celebration at “Rare Diseases Foundation of Iran (RADOIR) in Tehran.
RADOIR News- The contest is for the rare patients and their advocates all over Iran. But RADOIR welcomes hearing the international rare voices through their slogans and Mottos. You can share your global slogans via: international@radoir.org
The themes & objectives for the slogans are :
- The globalization of rare diseases
- The impression to motivate the rare patients
- Rare Children
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.
11 Sep2017
Rare Diseases Foundation of Iran at the 12th Annual ICORD Conference
The 12th Annual ICORD Conference and the 6th China Rare Disease Summit was held in Beijing, China, on September 7~10, 2017, which is organized by the International Conference on Rare Disease and Orphan Drugs (ICORD), Chinese Organization for Rare Disorders (CORD) and Peking Union Medical College Hospital (PUMCH).
A delegation from Rare Diseases Foundation of Iran, accompanied by Dr. Ali Davoudian, participated at the event in order to meet other patient societies and organizations’ leaders, and also to visit pharmaceutical companies and medical equipment factories.
19 Jul2017
The presence of Rare Diseases Foundation of Iran at the 12th Annual ICORD
The 12th Annual ICORD Conference and the 6th China Rare Disease Summit will be held in Beijing, China, on September 7~10, 2017, which is organized by the International Conference on Rare Disease and Orphan Drugs (ICORD), Chinese Organization for Rare Disorders (CORD) and Peking Union Medical College Hospital (PUMCH).
08 Jul2017
The Iranian community for Rare Disease Patients in Liechtenstein.
Dr. Ali Davoudian has registered Iranian advocacy community for Rare Diseases Patient in Liechtenstein in line with the goals of Rare Diseases Foundation of Iran.
01 Jul2017
Attending 2nd World Congress on Rare Diseases and Orphan Drugs
2nd World Congress on Rare Diseases and Orphan Drugs was an arena for interdisciplinary exchange among professionals in the field of Rare Diseases, Orphan Drugs, and Rare Disorders.
25 Jun2017
EURORDIS annual activity report 2016 has published recently.
EURORDIS annual activity report 2016 has published recently. National and International activities of patient organizations in membership with EURORDIS has been addressed in 102 pages report. Specific part dedicated to EURORDIS collaborations with other patient organizations in different countries, one of the organizations is Rare Diseases Foundation of Iran.