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Article History

Received: 6 February 2025

Accepted: 12 July 2025

First Online: 17 October 2025

Declarations

:

: Annick Massart received consulting fees from Alexion and Hansa, and support for attending meetings from Hansa (through her institution). She participated on a Data Safety Monitoring Board or Advisory Board for Novartis (through her institution). Laurent Weekers received support for attending meetings from AstraZeneca and participated in Advisory Boards for Alexion, Hanza, and Amicus. Kathleen J Claes received consulting fees from Alexion, Amgen, Novartis, and Sobi; honoraria for lectures from AstraZeneca; support for attending meetings and/or travel from Bayer. She participated on a Data Safety Monitoring Board or Advisory Board for Novartis and has a leadership or fiduciary role in other board, society, committee or advocacy groups for the Belgian Society of Nephrology. She is a member of the European Reference Network for Rare Kidney Diseases (ERKNet). Evelien Snauwaert is the beneficiary of a budget from the Fonds voor Innovatie en Klinisch Onderzoek (FIKO) type III from the Ghent University Hospital, received support from Alexion for meetings/travel and participated to a Data Safety Monitoring Committee/Advisory Board from Alexion. She is a member of the ERKNet. Djalila Mekahli received grants from Otsuka and Galapagos. She is supported by the Research Foundation Flanders (FWO; G0C8920N) and received a clinical senior research grant (1804123N). Laure Collard received consulting fees for an advisory board from Alexion (through her institution), and from Anlynam and Chiesi (through her company); consulting fees for symposium moderation from Anlynam and Chiesi (through her company); payment for lectures from Anlynam and Sandoz (through her company); payment for expert testimony from Twinpharma (through her company); financial support for attending meetings from Chiesi. Nathalie Godefroid participated to a Data Safety Monitoring Board or Advisory Board for Alexion. Koenraad Van Hoeck received honoraria for lectures from Thomas More Highschool (through his institution). Sebastien Block is an employee of Alexion Pharmaceuticals. Imad Al-Dakkak was an employee of Alexion Pharmaceuticals at the time of the study conduct, and he owns AstraZeneca stocks. Karin Dahan received grants from Alnylam (through her institution), consulting fees and honoraria for lectures from Alnylam and Sobi, support for attending meetings from Chiesi, and participated on a Data Safety Monitoring Board or Advisory Board for Alnylam. Patrick Stordeur received honoraria for lectures from Alexion Pharma Belgium and support for attending meetings from Thermofisher. Johan Vande Walle received consulting fees from Ferring, Astellas, Bayer, and Alexion (through his institution); payment for lectures from Ferring, Bayer, and Alexion (through his institution); payment for expert testimony from Ferring (through his institution); support for attending meetings from Alexion (through his institution). He participated on a Data Safety Monitoring Board or Advisory Board for Bayer (through his institution) and has a leadership or fiduciary role in other board, society, committee or advocacy group for the International Pediatric Nephrology Association and Connect 4 Children (through his institution). Tess Van Meerhaeghe, Eric Goffin, Brigitte Adams and Stefan Van Cauwelaert have nothing to disclose.

: The study was approved by the relevant ethics committee at every center.

: The study was conducted in accordance with the Declaration of Helsinki. The protocol was reviewed and approved by the relevant ethics committee at every center, and all participants or their legal representatives provided written informed consent for enrollment. No animals were involved in this research.

: All participants or their legal representatives provided written informed consent for enrollment.