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TUSEB-TUHKE Rare Diseases Report Has Been Published Online
Rare diseases are chronic, progressive disorders that affect approximately 6-8% of the general population. Up to 80% of rare diseases are of genetic origin. Between 6,000 and 8,000 rare diseases have been identified globally (www.eurordis.org). Three to four new diseases are added to these every year. Many rare diseases appear in the first years of life or in childhood. Patients and their families face problems such as delay in diagnosis, inadequate management of the disease, and lack of information and resources.
The definition of the rare disease varies in various parts of the world and even from country to country. Diseases that affect less than 200,000 patients in the USA and less than 50,000 patients in Japan are considered rare. On the other hand, diseases affecting 1 person in 2,000 people in the European Union (for example ORPHANET) and Turkey are considered as 'rare diseases'. However, diseases such as Behçet's disease, Mediterranean anemia, familial Mediterranean fever are seen as rare diseases in various regions of the world, while these diseases are relatively more common in the Eastern Mediterranean Region and its neighborhood, including our country.
Source: https://files.tuseb.gov.tr/tuhke/files/haberler/nadir-hastaliklar-raporu.pdf