Rare Diseases Registries in Bulgaria

ICRDOD has published an updated review of the epidemiological registries for rare diseases in Bulgaria, building on the previous analysis on this subject from 2012. The new report includes information on the state-of-the-art of epidemiological registries for rare diseases in Bulgaria up to August 2014. It introduces important new concepts such as the Global Rare Diseases Patient Registry and Data Repository of the Office for Rare Diseases Research at the US NIH, as well as the International Rare Diseases Research Consortium (IRDiRC). The review presents the provisions of the officially promulgated Ordinance № 16 of the Ministry of Health on the terms and procedure for registration of rare diseases and centres of expertise and reference networks for rare diseases, which concern the establishment of a national registry of patients with rare diseases in the country. Finally, the report summarises the collected information for 14 existing epidemiological registries for rare diseases in Bulgaria. The full text is available in our section for publications and analyses.