Last Added News
- Orphanet Annual Meeting Was Held
- Life Expectancy at Birth in Turkey is Increased (17 September 2020)
- Report of the Meeting of the Joint Working Platform on Diabetes by TUSEB-TUHKE, TUBITAK-MAM, and Istanbul University
- TUHKE Public Health Scientific Board Meeting was held
- TUHKE Infectious Diseases Scientific Board Meeting was held
- ALL NEWS
Rare Diseases Day
European Organization for Rare Diseases (EURORDIS) declared the last day of February as “Rare Diseases Day” in 2008 in order to raise awareness of the society and health sector on rare diseases, and to pay attention to the problems of these patients in the presence of society and decision-makers.
Rare diseases are chronic, progressive disorders observed in 6 – 8 % of the society and 80% of them are genetic. There are 6.000 – 8.000 diseases defined globally and every year, 3 – 4 diseases are added to this group (Satman et al., 2019). The prevalence of rare diseases is determined by European Organization for Rare Diseases (EURORDIS) and ORPHANET with the support of European Commission (Pak, 2017).
The diseases are considered as rare when it affects 1 in 2.000 citizens in Türkiye. The prevalence of rare disease around the world affects between 5 and 60 individuals (on average 40/100.000) per 100.000 population. It is estimated that there are between 300 and 400 million around the world, approximately 30 million in Europe and in Türkiye between 2.9 and 4.8 million people with at least one rare disease. 85% of rare diseases are ultra-rare diseases whose frequency ranges from 1/100.000 to 1/1.000.000.
Please click here for the report of Rare Diseases Day.