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. 2024 Feb 26;19:89. doi: 10.1186/s13023-023-02994-x

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© The Author(s) 2024

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

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Fig. 1 — Literature review flowchart. *Online information sources included: Guideline Central, National Organization for Rare Disorders (NORD), American Academy of Neurology (AAN), American Epilepsy Society (AES), International League Against Epilepsy (ILAE), Orphanet, Google, National Institute for Health and Care Excellence (NICE), Pharmaceutical Benefits Scheme (PBS), Canadian Agency for Drugs and Technologies in Health (CADTH), Ministerio de Sanidad, Consumo y Bienestar Social (MSCBS), Agenzia Italiana del Farmaco (AIFA), Haute Autorité de Santé (HAS), Gemeinsamer Bundesausschuss (G-BA), Bundesamt für Gesundheit (BAG), State of Israel – Ministry of Health, Ministry of Health, Labour and Welfare (MHLW)