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You can reach the survey study titled “Out-of-pocket Expenditures of Households Living with Rare Diseases” from the link below.

https://docs.google.com/…/ 1LRywwkiZ4eHzqOxSaAxu9f… / viewform…

The survey study, prepared under the leadership of the Health Economics and Policy Association (SEPD) and Rare Diseases Network, aims to determine the health expenditures of individuals with rare diseases and their families from their own pockets and to determine the economic impact of these expenditures on the household.

The data collected from you will only be used in educational and scientific activities within the scope of research, this information will not be shared with any other person or institution and your privacy will be strictly ensured.

The accuracy of your answers to the questions in the survey is very important in terms of the quality of the research. Therefore, we ask you to answer the questions in the questionnaire correctly and thank you for your assistance.

** The questionnaire can be filled in on behalf of the patient, by the patient or his relative.