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Authors
Linertová, Renata https://orcid.org/0000-0002-0138-9252
Péntek, Márta
Rodríguez-Díaz, Benjamín
Bodemer, Christine
Hübl, Vinzenz
El Hachem, May
Salamon, Gudrun
Alonso-Ferreira, Verónica
Stefanov, Georgi
Jain, Ritu
Ramallo-Fariña, Yolanda
García-Pérez, Lidia
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Funding
Funding for this research was provided by:
European Joint Programme for Rare Diseases (EJP RD COFUND-EJP Nº 825575)
Instituto de Salud Carlos III (AC21_2/00011)
National Research, Development and Innovation Fund of Hungary (2019-2.1.7-ERA-NET)
DEBRA Austria (DEBRA Austria)
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Article History
Received: 29 September 2025
Accepted: 2 March 2026
First Online: 19 March 2026
Declarations
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: Informed consent was obtained from all individual participants included in the study. Approval for the study was granted by ethics committee in each participating country: Ethics Commission of the Faculty of Psychotherapy Science and the Faculty of Psychology, Sigmund Freud University, Austria; Ethics Committee at the St. Panteleimon Hospital, Plovdiv, Bulgaria; Assitance Hôpitaux Publique de Paris, Bureau de la Protection des Données, France; Ethics Committee of Albert-Ludwigs-University Freiburg (22-1519-S2), Germany; Hungarian Medical Research Council (BM/26385-3/2023), Hungary; Ospedale Pediatrico Bambino Gesù Ethics Committee, Italy (protocol n. 3107/2023); Complejo Hospitalario Universitario de Canarias Ethics Committee, Spain.
: Not applicable.
: MEH, ChB and Cristina Has (member of the BUR-EB Study Group) are members of the European Reference Network for Rare Skin Diseases (ERN-Skin). ChB is the coordinator of ERN-Skin. MP is member of the EuroQol Group, the views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the EuroQol Group.
: The authors declare no competing interest for this manuscript.
