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Authors
White, Susan M. https://orcid.org/0000-0001-7611-634X
Wondergem, Annelotte P.
Breet, Isa
Dittmaier, Maren https://orcid.org/0009-0009-0026-2848
Bell, Katrina
Richmond, Christopher M. https://orcid.org/0000-0002-9778-4344
Hardikar, Winita
Bhatia, Kanika
Quinlan, Catherine
Orchard, David
D’Souza, Areetha
Chazin, Walter J. https://orcid.org/0000-0002-2180-0790
Smith, Christopher
Sparkes, Rebecca
Lam, Simon
Carter, Alexandra
Hopkin, Robert J. https://orcid.org/0000-0003-0770-5516
Khendek, Leticia
Sullivan, Bonnie R.
Becher, Naja
Simonsen, Anne Katrine W.
Kvistgaard, Helene https://orcid.org/0009-0003-9015-4539
Dempsey, Katherine
Miethke, Alexander G.
Gregersen, Pernille Axél
Phillips, Eliza https://orcid.org/0000-0002-7442-3167
Luijsterburg, Martijn S. https://orcid.org/0000-0001-5796-6541
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Article History
Received: 5 February 2025
Revised: 11 June 2025
Accepted: 2 July 2025
First Online: 19 July 2025
Competing interests
: The authors declare no competing interests.
: This research project was conducted within the Rare Diseases Now project approved by the Royal Children’s Hospital Ethics Committee, HREC approval 67401. Research protocols were approved via local institutional research boards and regional ethics committees, in keeping with national guidelines and the principles laid out in the Declaration of Helsinki. Verbal consent documented by the clinician was obtained from all patients or their parents/guardians. Written consent was obtained and archived for all included patient photographs.
