About Rare Disease Foundation of Iran
Rare Diseases Foundation of Iran (RADOIR) is a non-profit and independent national and international sphere of operation. This foundation was established in 2009 with all the motivation and assistance extended by Dr.Ali Davoudian to promote the health system and lack of an organization to support rare disease patients all over Iran.
It is noteworthy to mention that the idea to establish a non-governmental organization occurred to Dr.Ali Davoudian in 2005. The mystery of rare diseases and patients in Iran, just like a flicker to a flame made him to begin a vast research survey to discover further challenges and problems with rare patients specially affected children and focus on providing the required medical and therapeutic services for them as the first and sole rare patients organization registered on 7th March 2009 in Iran. RADOIR’s outstanding achievements resulting from the innovative ideas and humanitarian purposes significantly motivated the national and international healthcare authorities and specialists to start their global awareness raising collaborations with Rare Diseases Foundation of Iran (RADOIR). For the first time in 2018, Rare Patients’ Registry System (SABNA) has been implemented and designed on a web-accessible basis with accessibility from all over the world.
Eventually after 14 years, the Iranian National Strategic Plan for Rare Diseases which was collaboratively developed by Rare Diseases Foundation of Iran (RADOIR) and Tehran University of Medical Sciences (TUMS) with the collaboration of national and international healthcare experts and the immense support of Parliamentary Health & Treatment Commission of Iran, it was approved by the Supreme Council of Health &Food Security the minister of health and medical education of Iran in 2021. Another outstanding achievement by RADOIR, is the denomination of National Rare Disease Day in Iran to be annually celebrated on the 8th Esfand ) Iranian Calendar) to honor the Iranian rare patients in the official calendar of Iran. The Iranian National Strategic Plan for Rare Diseases which was collaboratively developed by Rare Diseases Foundation of Iran (RADOIR), Tehran University of Medical Sciences (TUMS), the collaboration of local and international experts researchers and also with the immense support of parliamentary health and treatment commission of Iran and approved by the Supreme Council of Health &Food Security the minister of health and medical education of Iran.
The National Rare Disease Day in Iran is approved to be annually celebrated on the 8th Esfand ) Iranian Calendar) to honor the Iranian rare patients.