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.Launching the online registration system for the rare patients nationwide is due to the serious effort of RADOIR Medical Committee and the IT department of the foundation.
Dr. Hamidreza Edraki, Manging Director of RADOIR, stated: “In this system, the rare patients will record their medical data while completing the registration process. After final approval, they will be registered as a rare case.”
At the 7th session of RADOIR’s Medical Committee, which was attended by Dr. Seyed Javad Mousavi, Social Deputy at the University of Medical Sciences, Prof. Dariush Farhood, the father Genetics Science, and Dr. Masjedi, the General Sectary of the Anti – Smoking Society and the other Committee’s members confirmed 137 cases of rare diseases and emphasized on SABNA registry significance.
137 cases of rare disease in the country have been approved by the Medical Committee of RADOIR and the number of patients will be recorded online.