According to the survey, more than half of Russians have never heard of orphan diseases

Most Russians - 65% - have never heard of orphan (rare) diseases, a study by the NAFI Analytical Center and the «Ludi-Mayaki» Charity Foundation showed.

Now the list of orphan diseases of the Ministry of Health of the Russian Federation includes more than 260 diseases. SMA (58% have heard of it), lymphoma (54%) and hemophilia (49%) are the most familiar to residents of the country. At the same time, more than half of Russians are ready to transfer donations for medicines for people with orphan diseases.

63% of Russians believe that it is charitable foundations that finance treatment and buy expensive medicines from pharmaceutical companies for people with rare diseases. At the same time, 60% of respondents do not know organizations specializing in this problem.

Every second respondent thinks that the medicines are bought by the patients themselves or their relatives (50%) or the state (49%). One in three believes that treatment is provided at the expense of patrons (32%). VSP Co-Chairman Yu . Zhulev says that the problem of awareness of orphan diseases directly affects the possibilities of treatment.