Work packages


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

dr.Kassim Javaid, Rheumatologist at NDORMS, Oxford, United Kingdom