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Authors
Scheidecker, Sophie https://orcid.org/0000-0003-0902-8926
Bär, Séverine
Kröll-Hermi, Ariane
Delvallée, Clarisse
Rinaldi, Bruno
Korpioja, Anita https://orcid.org/0000-0001-5512-4375
Geoffroy, Véronique https://orcid.org/0000-0002-4149-0857
Schaefer, Elise
Secula, Samira
Jaeger, Catherine https://orcid.org/0000-0001-8519-8893
Stoetzel, Corinne
Kassel, Olivier
Straehle, Uwe https://orcid.org/0000-0002-4062-9431
Bertoli-Avella, Aida https://orcid.org/0000-0001-9544-1877
Zonic, Emir
Lamouche, Jean-Baptiste
Zanlonghi, Xavier
Etard, Christelle
Muller, Jean https://orcid.org/0000-0002-7682-559X
Rahikkala, Elisa https://orcid.org/0000-0003-2760-7059
Friant, Sylvie https://orcid.org/0000-0002-5412-6288
Dollfus, Hélène https://orcid.org/0000-0002-2249-895X
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Article History
Received: 16 February 2024
Accepted: 29 January 2025
First Online: 5 March 2025
Competing interests
: The authors declare no competing interests.
: This research followed the tenets of the Declaration of Helsinki. Approval was obtained from the institutional review boards “ Comité de Protection des Personnes ” (EST IV, N◦DC-20142222), Northern Ostrobothnia Hospital District, Oulu, Finland (EETTMK: 45/2015, amendment 2020), and Strasbourg University Hospital ethics committee as part of the ultra-rare disease cohort. Informed consent was obtained before study inclusion. Written informed consent for publication of images was also obtained.
