The National Date For Rare Disease Day Was Legislated As 8th Esfand, 1399 equivalent in the Christian calendar 26th Feb., 2021
RADOIR NEWS– Due to the long time follow ups by Rare Diseases Foundation of Iran(RADOIR) and After legislative process at the Iranian Public Culture Council of the Ministry of Culture and Islamic Guidance and the high council of Cultural evolution and the Iranian parliament, it was approved to mention a date for the rare disease day in the Iranian calendar for the first time.
Each year in 90 countries of the world, the rare disease day is celebrated for the rare patients and their families and all the rare diseases organizations, NGO’s, alliances and centers participate in this event on 28th February. The rare diseases foundation of Iran has taken part in Rare Disease Day campaign and held a symposium with the attendance of governmental authorities from the ministries of health, education, labor & social welfare, interior & foreign affairs , artists, sportsmen, rare disease advocates and ambassadors and of course pays tribute to the rare patients and their families since 2009.
There are about 6000-8000 rare diseases identified in the world while in Iran, around 344 rare diseases have been registered and confirmed by RADOIR’s medical committee. Naming a national rare disease day and introducing these type of diseases have an efficient impact on the calculation of the number of people living with rare diseases.