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 Tess de Rooij, junior EU project manager at Leiden University Medical Center, the Netherlands

Ms Jacqueline van der Blom, EU project assistant 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-Leaddr. 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