Alanay, Yasemin http://orcid.org/0000-0003-0683-9731
Mohnike, Klaus
Nilsson, Ola
Alves, Inês
AlSayed, Moeenaldeen
Appelman-Dijkstra, Natasha M.
Baujat, Genevieve
Ben-Omran, Tawfeg
Breyer, Sandra
Cormier-Daire, Valerie
Gregersen, Pernille Axél
Guillén-Navarro, Encarna
Högler, Wolfgang
Maghnie, Mohamad
Mukherjee, Swati
Cohen, Shelda
Pimenta, Jeanne
Selicorni, Angelo
Semler, J. Oliver
Sigaudy, Sabine
Popkov, Dmitry
Sabir, Ian
Noval, Susana
Sessa, Marco
Irving, Melita
Funding for this research was provided by:
BioMarin Pharmaceutical
Article History
Received: 29 June 2022
Accepted: 4 June 2023
First Online: 26 June 2023
Declarations
:
: Not applicable.
: Not applicable.
: KM received support for the present manuscript from BioMarin Pharmaceutical; had a consulting agreement with Biomarin; received payment or honoraria for lectures, podcast from Biomarin; participated on a Data Safety Monitoring Board for QED; and was Vice chair of German Patient organization BKMF e.V. ON received speakers honoraria from Pfizer, Abbott, BioMarin; participated on a Data Safety Monitoring Board or Advisory Board for BioMarin; was an XLH registry steering committee member for KyowaKirin; and was on the ESPE program organizing committee. MA received support from medical writer, funding, and article processing fees from BioMarin; consulting fees, payment or honoraria, and support for attending meetings and/or travel from BioMarin and participated on a Data Safety Monitoring Board or Advisory Board for BioMarin. NMA-D received an EU Health grant for the coordination of the European Registries for Rare Bone and Mineral Conditions. SB received support from medical writer, funding, and article processing fees from BioMarin; consulting fees, payment or honoraria, and support for attending meetings and/or travel from BioMarin and participated on a Data Safety Monitoring Board or Advisory Board for BioMarin. VC-D received payment or honoraria from BioMarin Ipsen; and participated on a Data Safety Monitoring Board or Advisory Board for ULtragenyx-Mereo, QED-Propel, BioMarin. EG-N received support for the present manuscript, received payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events, and support for attending meetings from BioMarin Pharmaceutical; participated on a Data Safety Monitoring Board for BioMarin Pharmaceutical; and had a leadership or fiduciary role in other board, society, committee or advocacy group for AEGH. WH received consulting fees from BioMarin for an Advisory Service agreement. MM received grants or contracts from Pfizer, Novo Nordisk, Merck Serono; consulting fees and payment or honoraria from Pfizer, Novo Nordisk, Merck Serono, Sandoz, BioMarin and participated in a Data Safety Monitoring Board or Advisory Board for Pfizer. SM is an employee of BioMarin Pharmaceutical Inc. and owns stocks in the company. SC is an employee of BioMarin Europe, Ltd. and owns stock or stock options in the company. JP is an employee of BioMarin and owns stock or stock options in the company. AS received honoraria from BioMarin for participating in a Data Safety Monitoring Board. JOS received support for medical writing, funded by BioMarin; personal payment or honoraria for lectures from BioMarin. IS is an employee of BioMarin Pharmaceutical Inc. and holds stock or stock options in the company. MS received support for the present manuscript from the Associazione per l’Informazione e lo Studio Dell’Acondroplasia-ODV; two grants for members meeting from BioMarin payment or honoraria from BMRN VOXZOGO Launch Meeting 2021 and BioMarin Steering Committee Working Together with Patients; participated in the BioMarin Achondroplasia Management Guidelines and a BioMarin Advisory Board (Achondroplasia Care Pathway Survey Review); and is the unpaid president of AISAC ODV. MI received has received honoraria for consultancy services from BioMarin, QED Therapeutics, Pfizer/Therachon, Sanofi, Ascendis, Alexionk, Kyowa Kirin, Innoskel and NovoNordisk. All other authors declare that they have no competing interests.