This project is organised in 5 Work Packages and 5 cross-cutting working groups (so called Vertical Themes).
Workpackage 1: Project Management and Coordination
Lead: dr. Natasha Appelman-Dijkstra, Endocrinologist at Leiden University Medical Center, the Netherlands
Ms Charlotte van Beuzekom, EU project manager at Leiden University Medical Center, the Netherlands
Ms Joyce Hogewoning-Rewijk, project assistant at Leiden University Medical Center, the Netherlands
Workpackage 2: Access and Dissemination
Lead: dr.Marina Mordenti, Biotechnologist at the Department of Rare Skeletal Disorders & CLIBI Laboratory, Rizzoli Orthopaedic Institute (IOR), Bologna
Ms Manilla Boarini, Data expert at Department of Rare Skeletal Disorders & CLIBI Laboratory, Rizzoli Orthopaedic Institute (IOR), Bologna
Workpackage 3: Evaluation and Quality Control
Lead: dr. Ondrej Soucek, Pediatric Endocrinologist, Second Faculty of Medicine, Charles University and Motol University Hospital, Prague, Czech Republic.
Co-Lead: dr. Marco Roos, Scientist in Biosemantics and e-science at the Human Genetics Department of Leiden University Medical Center, the Netherlands
Workpackage 4: Clinical Outcomes
Lead: dr. Corinna Grasemann, Consultant Pediatric Endocrinologist at Children’s Hospital Bochum, Bochum Germany
Workpackage 5: Patient Outcomes
Lead: Inês Alves, Patient Representative ANDO Portugal
Rebecca Skarberg, Patient Representative NFOI/OIFE
dr.Kassim Javaid, Rheumatologist at NDORMS, Oxford, United Kingdom
