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Professor Ilhan Satman Participated in the UPNAM the Third Rare Diseases Awareness Symposium
Professor Ilhan Satman MD, president of Institute of Public Health and Chronic Diseases delivered a speech on TUSEB's Perspective on Rare Diseases’ at the Third Rare Diseases Awareness Symposium organized by Umraniye Training and Research Hospital Pediatric Rare Diseases Research and Treatment Center (UPNAM) on February 28, 2020.
Professor Satman explained at the meeting that the frequency of rare diseases in Turkey and some rare diseases are relatively more common than in the rest of the world due to country-specific reasons (such as consanguineous marriage, lack of awareness, inability to access appropriate healthcare services, etc.). Continuing her speech by emphasizing the importance given to rare diseases by TUSEB, Dr. Satman gave some details on the recently published 'TUSEB-TUHKE Rare Diseases Report', which covers rare diseases frequently seen in the country. She also stated that Turkey has just joined 'Orphanet', the Rare Diseases and Orphan Medicines Information and Sharing Platform of which 40 countries in Europe are already members, and Turkey is included as the 41st member. Dr. Satman, then explained that they started to organize the 'Orphanet-Turkey' webpage and to translate the Orphanet Rare Diseases Nomenclature into Turkish. She announced that the necessary works for the Orphanet Platform are being carried out actively and that they have formed the Orphanet-TR National Advisory Board with 35 members, and that the first meeting of the "Orphanet-TR National Advisory Board" will be held in the TUSEB Kosuyolu campus with the participation of specialist physicians from the relevant associations.
In the last part of her speech, Dr. Satman mentioned the calls for proposals opened by TUSEB in the 2019-2020 period such as 'Applied Project Collaboration in Drug Development', 'Strategic R&D Projects in Innovative Drug Development ', 'Applied Project Collaborations in Precious and Translational Medicine', 'Applied Project Collaborations in Medical Devices and Biomaterials', 'Collaboration in Vaccine Development' and 'Applied Project Collaborations in the Development of Diagnostic Kits'. Listing the rare disease-related calls, and explaining that the project calls will be reopened on these issues, Dr. Satman suggested that young researchers become members of TBYS (TUSEB Project Information and Management System) and follow the calls.