Rare Disease Foundation of Iran City: Tehran Phone : +982166572937
Rare Diseases Foundation of Iran is a non-profit institution with national and international sphere of operation. This foundation was established in 2008 with all the assistance extended by Dr Ali Davoudian given the requirements of the health system and lack of an organization to support rare disease patients in Iran.
For 2020, we could not hold the event in large due to the prevalence of COVID2019 which definitely could affect our children and their families. Just could be able to get them together for 1 hour in an isolated hall and take the photos and prepare the posters for Rare Disease Day 2020.
Word orphan “meaning Nader or Yatim in Persian” is used for those diseases with incidence of 1 to 5 in every 10000 people. According to the statistics produced by the concerned organizations total number of patients suffering from known 6000 to 8000 rare diseases includes 8 percent of the total world population. In the late 1980s and early 1990s those countries with developed social security and medical services found that there were a number of diseases that could not be classified in the classic diseases categories and because of their rare incidence should only be included in a category solely produced for such diseases.
Since then lots of studies done on rare diseases and in a very short period many rare diseases were identified accordingly. In Iran until now 218 rare diseases have been identified; diseases that have affected more than 1.2 million people of Iran.
RADOIR has created a youtube channel bringing togther video content around rare diseases in Iran.