1 VSOP Dutch Patient Association for Rare and Genetic Diseases, Project Partner of EPTRI, Third Party Member of C4C and Project Partner of PedCRIN, Soest, The Netherlands.
2 Knowledge Institute of the Dutch Association of Medical Specialists, Utrecht, The Netherlands.
3 Emma Children's Hospital, Pediatric Clinical Research Office, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.
4 Intensive Care and Department of Pediatric Surgery, Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands.
5 Department of Pharmacology and Toxicology, Radboud University, Nijmegen, The Netherlands.