1. Regional Coordinator Centre for Rare Diseases Academic Hospital of Udine Udine Italy
2. Department of Medicine University of Udine Udine Italy
3. Academic Medical Centre University of Amsterdam Amsterdam The Netherlands
4. Institute of Hygiene and Clinical Epidemiology Academic Hospital of Udine Udine Italy
5. Charles Dent Metabolic Unit, NHNN London UK
6. Reference Center for Neurometabolic Diseases La Pitié‐Salpêtriere University Hospital Paris France