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. 2023 Jan 4;10:1049349. doi: 10.3389/fpubh.2022.1049349

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Copyright © 2023 Hatirnaz Ng, Sahin, Erbilgin, Ozdemir, Yucesan, Erturk, Yemenici, Akgun Dogan, Ugur Iseri, Satman, Alanay and Ozbek.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

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The experimental flow of the survey. The survey was constructed in three main steps: planning application and analysis. The questions were gathered from previously conducted surveys that are relevant for patients in Türkiye. Additional questions were created for country specific conditions. The dissemination of the survey was done through patient associations, Türkiye Rare Disease Network and ACURARE in-house contact databases, in addition to social media accounts of ACURARE, (Instagram: acuraretr, Twitter: acurare1, LinkedIn: ACURARE). The data were retrieved directly from the SurveyMonkey platform, exported to SPSS V21, and analyzed by the independent consultant service provider. The figure was created by Draw.io (https://drawio-app.com/).