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Authors
Hessels, Josefien https://orcid.org/0000-0002-9001-9893
Post, Marco C.
Boerman, Sanne
Droege, Freya
Dupuis, Olivier
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Crocione, Claudia
Grabowski, Christina
Blom, Ria
Botella, Luisa M.
Brocca, Fernando
Erasme, Didier
Federici, Paolo
Lundgren, Mildred
Soderman, Tone
Druckman, Karen T.
Woods, Dara
Geisthoff, Urban W.
Haahr, Pernille D.
Kjeldsen, Anette D.
Mager, Johannes-Jurgen
Dupuis-Girod, Sophie
Buscarini, Elisabetta
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Funding
Funding for this research was provided by:
European Union (101085076)
Stichting Wetenschappelijk onderzoek Rensu Osler
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Article History
Received: 10 September 2024
Accepted: 25 June 2025
First Online: 1 August 2025
Declarations
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: This is an observational study. The Medical research Ethics Committees United (MEC-U; W.22.132) has confirmed that the Dutch law on Research Involving Human Subjects Act (WMO) is not applicable and no ethical approval is required. The study was approved by the Local Research & Development department (Z22.085). Electronic informed consent was obtained from all participating patients/ partners before entering the questionnaire.
: U. Geisthoff: Board member German HHT self-help group (Morbus Osler-Selbsthilfe e.V.), German HHT Foundation (Osler-Stiftung); member: International Society for the Study of Vascular Anomalies (ISSVA), German self-help group for vascular anomalies (Bundesverband angeborene Gefäßfehlbildungen e.V.), Global Research and Medical Advisory Board of CureHHT; honorary for medical expert opinion for the Austrian Federal Government on centers for rare diseases. No competing interests for the other authors.
