https://orcid.org/0000-0001-6474-9959;2. Lysosomal Storage Disorders Unit, Department of Haematology, Royal Free Hospital, UCL Medical School, London, UK;3. Atul Mehta, Lysosomal Storage Disorders Unit, Department of Haematology, Institute of Immunity and Transplantation, Royal Free Hospital, Rowland Hill Street, London NW3 2PF, UK.;4. Center for Hematology, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA;5. School of Life and Medical Sciences, University of Hertfordshire, Hatfield, UK;6. Referral Center for Lysosomal Diseases, University Hospital Paris Nord Val de Seine, site Beaujon, Clichy, Paris, France;7. Centre for Rare Diseases, Academic Medical Centre Hospital of Udine, Udine, Italy;8. Research Evaluation Unit, Oxford PharmaGenesis Ltd, Oxford, UK;9. Department of Gastroenterology, Hepatology and Infectious Diseases, Heinrich‐Heine University, Düsseldorf, Germany;10. Division of Metabolism, Department of Pediatric Specialist, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy;11. Unit of Rare Diseases, Department of Pediatrics, IRCCS Giannina Gaslini Institute, Genoa, Italy;12. Lysosomal Disorders Unit and CFCT, O and O Alpan LLC, Fairfax, Virginia, USA;13. Department of Orphan Diseases, National Research Center for Hematology, Moscow, Russia;14. Medical Faculty, University of Rzeszow, Rzeszow, Poland;15. Department of Medicine at Huddinge, Hematology Center Karolinska, Karolinska Institute, Karolinska University Hospital Huddinge, Stockholm, Sweden;16. Villa Metabolica, Center of Pediatric and Adolescent Medicine, University Medical Center of the Johannes Gutenberg University Mainz, Mainz, Germany;17. Department of Gastroenterology, Jaslok Hospital and Research Centre, Mumbai, India;18. Department of Gastroenterology, Apollo Hospital, Mumbai, India;19. Department of Pediatrics, Graduate School of Medical Sciences, Kumamoto University, Kumamoto, Japan;20. Department of Child Neurology, Faculty of Medicine, Tottori University, Yon ago, Japan;21. Osteoporosis and Metabolic Bone Diseases Laboratory, Institute of Immunology, Genetics, and Metabolism (INIGEM) CONICET ‐ UBA, Buenos Aires, Argentina;22. University College Dublin, The Mater Misericordiae University Hospital, Dublin, Ireland;23. Unit of Rare Diseases, Hospital Vall d'Hebron, Barcelona, Spain;24. Medical Genetics Service – HCPA, Genetics Department, UFRGS, Porto Alegre, Brazil;25. Department of Clinical Haematology, Bone Marrow Transplant Service, The Royal Melbourne Hospital, Melbourne, Victoria, Australia;26. Department of Human Genetics and Medicine (Hematology), University of Miami Miller School of Medicine, UHealth Sylvester Coral Springs, Coral Springs, Florida, USA;27. Shaare Zedek Medical Center and Hadassah Medical School, Jerusalem, Israel;28. Hadassah Medical School, Jerusalem, Israel