RADOIR NEWS – Eleven rare diseases approved at RADOIR to complete its directory in 2018
11 rare diseases were approved and added to the directory of 218 rare diseases at the 8th RADOIR’s medical committee.
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.
ICORD is an International Society for all individuals actively involved in rare diseases and/or orphan drugs, including health care, research, academic, industry, patient organisations, regulatory authorities, health authorities, and public policy professionals. The mission of ICORD is to improve the welfare of patients with rare diseases and their families world-wide through better knowledge, research, care, information, education and awareness. One of the main activities of ICORD is the organisation of the ICORD annual meetings, which have been successfully arranged ten times all over the world.
The 2nd International Brain Mapping Symposium held in Tehran, 10-11 October 2018
RADOIR NEWS_ National Brain Mapping Laboratory held the 2nd International Brain Mapping Updates Symposium in Tehran with presence of different national and international scientists. Dr. Hamidreza Edraki, Managing Director of RADOIR and Dr. Mehdi Norouzi, RADOIR’s Deputy of Research attended the event, accordingly.
RADOIR NEWS_ Dr. Maryam Imaniyeh, Dr. MohamadJavad Zarif’s wife, appointed as RADOIR ambassador of kindness.
A meeting session to call for rare patient’s support between Rare Diseases Foundation of Iran and Diplomatic Ladies Association was held on Wednesday 10th October at RADOIR.
The first panel of NBML was held on Friday 28th September 2018 presenting innovative, functional imaging and screening methods about early diagnosis of the rare diseases.
At 13th ICORD which was held on 20-21 Sep, 2018 in Stockholm-Sweden, RADOIR & EURORDIS signed partnership MOU for further mutual support of rare patients as a global approach.
RADOIR NEWS- On Thursday 20th September 2018, Mr. Yaser Davoudian , RADOIR Chairman and Mr. Yann Le Cam, EURORDIS president signed MOU on their partnership for 5 years based on which they will collaborate on making solutions for assisting rare patients and their families with their sufferings and problems.
SABNA registry was established to electronically record the case of rare patients nationwide by Rare Diseases Foundation of Iran.
RADOIR NEWS_ Rare Diseases Foundation of Iran achieved one of its most prominent and outstanding goals at the time of the successor chairman, Mr. Yaser Davoudian and on the occasion of the 10th anniversary of its establishment.