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