Cooperation Policy of Rare Diseases in the European Union

Abstract4-5% of neonates are affected by rare diseases, 75% of which occur in children under ten years of age. This fact requires additional costs and special access. The aim of this paper is to analyze expenditures, policy and rare disease health care legislation (children comprise most of the patients). The survey focuses on the EU countries in comparison to the situation in the Czech Republic. The basic methods used are literature review, the analysis of available statistics data regarding the number of persons and related financial requirements for the treatment of rare diseases. The time series and histograms are generated.Based on the analysis, it was discovered that there are no fundamental differences between the care of people with rare diseases in the EU and in the Czech Republic. Current legislation and activities at the EU level stimulate the member states (including the Czech Republic) to further support in this field. Suitable and appropriate conditions for the social integration of children suffering from rare diseases are created. Treatment of rare diseases involves significant financial costs associated not only with the drugs themselves, but also with the followed social integration. New methodologies and programs for this segment are formed in the EU and in the Czech Republic. These strategies set out a shared vision for improving the lives of all those with rare diseases. The focus throughout is patients and families