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
dr Ana Priego Zurita, research fellow at Leiden University Medical Center, the Netherlands
dr Mariya Cherenko, research fellow 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
Dr. Manila 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
Eurr-Bone 