Rare diseases and orphan drugs in Eastern European Countries

Abstract

Background: Rare diseases are a serious public health problem. The countries of Eastern Europe are republics
in transition. Although many of them are already members of the EU and others could be further accepted, at
this stage it is difficult for local governments to spend money on rare diseases. The aim of this article is to
review current rare diseases and orphan drug activities in Eastern European countries (EEC).
Methods: An extensive review of published literature and conference proceedings was undertaken in order to
ascertain the current status and ongoing activities in 10 Eastern European countries - Belarus, Bulgaria, Czech
Republic, Hungary, Moldova, Poland, Romania, Russia, Slovakia, and Ukraine. Data were collected and
aggregated in 5 directions – information and awareness; diagnosis and screening practices; clinical
management and rehabilitation; patient organizations and national plans on rare diseases.
Results: The awareness and public health initiatives on rare diseases in Eastern European countries are
generally low. EEC, which are also EU member states provide comparatively better healthcare services to
people with rare diseases in respect to clinical management, rehabilitation and access to orphan drugs.
Patient associations are becoming more and more active, thus pushing local governments to consider EU
legislation and best practices on rare diseases. However, the gap between EEC and the rest EU member states
require intensive attention and support by the European commission, especially on improving awareness by
translation of available information sources in local languages, and facilitating networking projects among all
European countries.