Аннотации:
© 2020, Advanced Scientific Research. All rights reserved. Rare diseases are defined as diseases with a particularly low prevalence. As a rule, disease will be considered as rare if it affects no more than 5 persons over 10 000 (European prospective). Rather limited number of patients and high cost of research and diagnosis bring the limitations when it comes to legal regulation and state support of combating such diseases. Undoubtedly, when it comes to orphan diseases the social security coverage, the quality of healthcare services highly depends on financial and humanitarian opportunities of the States. This is why the states cooperation and development of common policies are very crucial when it comes to the question of regulation of orphan diseases. Successful cooperation is more likely to be achieved within the international integration organizations. In this paper we will examine the legal framework for orphan (rare) disease in European Union and Eurasian Economic Union. We also will draw our attention on specific systems, technologies currently used in the field of regulation of orphan diseases, such as European Reference Network, eHealth.