ISTisNA Project Survey Results” was published in the “FRONTIERS IN PUBLIC HEALTH” journal.

Scientific Article “Obstacles and Expectations of Rare Disease Patients and their Families in Turkey: ISTisNA Project Survey Results” was published in the “FRONTIERS IN PUBLIC HEALTH” journal. Rare diseases constitute a significant part of the healthcare system of all countries. Unfortunately there are limited studies and low level of knowledge about rare disease and patientsboth in Turkey and other countries. The objective of this survey-based research was to raise awareness of rare disease in public and to evaluate rare disease patients and their families within the scope of the ISTisNA project.

Approximately 500 patients and their relatives were conducted in this comprehensive survey-based study. Results showed thatthe most important way to overcome the difficulties encountered in the ecosystem consisting of individuals with rare diseases is to increase the number of rare diseases-specific diagnosis and treatment centers and to share information about rare disease with society. The survey also provided important data for the preparation of the ISTisNA project, which started in September 2023. We would like to thank all the patients, their relatives and all non-governmental organizations who support the project and answered the questionnaire in a very short time.

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