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Orphanet Annual Meeting Was Held
'Orphanet' is an International Information Network on Rare Diseases and Orphan Drugs represented by 40 countries, most of which are members of the European Union. Orphanet was previously funded as a European Union project and coordinated by INSERM in France. The Institute of Public Health and Chronic Diseases (TUHKE) is the representative of Turkey together with the Department of Autism, Mental Special Requirements, and Rare Diseases of the Ministry of Health.
The Orphanet annual meeting was held online on October 18-19, 2021. At the meeting, information about the activities proposed to continue the activities of Orphanet in the upcoming period was presented by the Orphanet-France team and the subject was discussed in detail with the members.
Within the scope of Orphanet activities, a specific nomenclature system has been developed for more than 10,000 rare diseases and their synonyms, and codes for each rare disease and its subtypes have been prepared. This nomenclature system, which is currently translated into 8 languages, has been translated into Turkish as the 9th language by the Institute of Public Health and Chronic Diseases. This year, the video prepared on Orpha codes was introduced at the Orphanet annual meeting.