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February 28 Rare Disease Day
This year, 'Rare Diseases Day' is celebrated by the Institute of Public Health and Chronic Diseases - The Health Institutes of Turkey (TUSEB-TUHKE), and Health Services General Directorate Autism, Mental Special Needs And Rare Diseases Department - The Turkish Ministry of Health with the online symposium 'Rare Diseases Awareness Symposium' in February 2021. The event started with a comprehensive speech delivered by the Minister of Health, Dr. Fahrettin Koca, emphasizing the importance of the issue, followed by the Irish National Director for Rare Diseases, Prof Dr. Eileen Treacy, conveying the experiences of Ireland as a successful country example of the National Action Plan on rare disease. After that two panels were organized within the context of this activity. In the first panel, which focused on successful national studies on screening and registry systems regarding the specific rare diseases, integration efforts in international platforms such as the Orphanet platform are discussed. In the second panel held in the afternoon session, the problems, opportunities, and obstacles encountered in the management of rare diseases in Turkey were discussed by non-governmental organizations (NGOs). In this panel, the activities of the Children's Metabolism Association, Medical Genetics Association, Turkish Ophthalmology Association, Turkish Children's Neurology Association, and Turkish Dermatology Association - Epidermolysis Bullosa Working Group on rare diseases were presented. In addition, speeches were made by representatives of some NGOs, the problems and expectations of patients with rare diseases and their relatives were expressed. In the last session of the symposium, a report which was prepared on the issues discussed such as problems, solution suggestions, and expectations was read. This report then published online in the instituinal website.