52% of Russians prepared to donate to funds for people with rare diseases

52% of Russians are prepared to donate to funds for people with rare ‘orphan’ diseases


This survey was conducted by the National Agency for Financial Studies analytical centre.




There are more than 260 diseases on the Russian Ministry of Health’s list of rare diseases, although according to the survey results, 65% of respondents have never heard of a single one. 7% answered that they were aware of one or more of the rare diseases. The best-known was spinal muscular atrophy, of which 58% said they had heard, with 54% having heard of lymphoma and 49%, haemophilia.


These rare ‘orphan’ diseases cannot be cured, but therapy helps to improve patients’ quality of life. The course for one patient can amount to tens of millions of roubles. 63% of respondents believe that charitable foundations buy medicines for people with orphan diseases in Russia. 50% think that this cost is covered by the patients themselves or by their relatives. At the same time, 52% of respondents said that they were ready to donate money to foundations that purchase medicines for people with orphan diseases.


60% of respondents said that they were not familiar with any foundations that help those living with orphan diseases. 40% said that they did know about such foundations, but only 6% could name a specific organisation. Some most commonly named foundations in the survey included Gift of Life, Circle of Goodness, Butterfly Children, Live Now, Life as a Miracle, and SMA Families.


1,100 people aged 18 and over from all over Russia participated in the survey.


Source: https://www.asi.org.ru/news/2023/04/03/65-rossiyan-nikogda-ne-slyshali-ob-orfannyh-zabolevaniyah/


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