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Traditionally, the National Alliance of People with Rare Diseases (NAPRD) will hold a meeting of patient representatives during the Fifth National Conference on Rare Diseases. The main topic of the event is the adoption and promulgation of Ordinance № 16 of 30 July 2014 on the terms and procedure for registration of rare diseases and centers of expertise and reference networks for rare diseases and what changes would face the patients as a result of this document. For more information and program of the meeting, please visit the official website of NAPRD.