THE ROLE OF THE NATIONAL REGISTRY IN PROVIDING LONG-TERM CARE FOR PATIENTS WITH RARE DISEASES
Journal Title: Българско списание за обществено здраве (Bulgarian Journal of Public Health) - Year 2018, Vol 0, Issue 3
Abstract
Rare diseases have become a policy priority in the common European public health. Limited number of patients and scarcity of knowledge and expertise – designate them as a distinctive domain of very high added-value for action at the community level in this area. The establishment of registers for patients with rare diseases is a priority in the European Union and the European Commission has taken active steps to support their development. Since May 2017 the National Registry for Patients with Rare Diseases has been functioning at national level as a monitoring system to collect epidemiological data on rare diseases in the country, support for policy development and healthcare planning.
Authors and Affiliations
Reni Petkova, Petko Salchev, Plamen Dimitrov
Keywords
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