- Centre for Rare Diseases, Center for Health Economics Research Hannover (CHERH), - Institute of Clinical Epidemiology and Biometry, Center for Health Economics Research Hannover (CHERH), Centre of Mental Health, University Hospital - Department of Psychiatry, Psychosomatics and Psychotherapy, - Institute of Clinical Epidemiology and Biometry, - Centre for Rare Diseases, University of Hamburg - Department of Medical Psychology,, RWTH Aachen University Hospital - Center for Rare Diseases and Department of Digitalization and General Practice, Ruhr University of Bochum - Department of Psychosomatic Medicine and Psychotherapy, University of Regensburg - Centre for Rare Diseases Regensburg, Johannes Gutenberg University Mainz - Centre for Rare Disease and Department of Psychiatry and Psychotherapy, Ulm University - Department of Neurology, Goethe University Frankfurt - Frankfurt Reference Centre for Rare Diseases, University of Regensburg - Centre for Rare Diseases Regensburg, Goethe University Frankfurt - Frankfurt Reference Centre for Rare Diseases, University Hospital Magdeburg - Central German Competence Network for Rare Diseases, University Hospital of Tübingen - Centre for Rare Disease, University Hospital Ulm - Department of Psychosomatic Medicine and Psychotherapy, University Hospital Münster - Department of Psychosomatic Medicine Und Psychotherapy, Ruhr University of Bochum - University Hospital of Pediatrics and Adolescent Medicine, Allianz Chronischer Seltener Erkrankungen (ACHSE), University of Hamburg - Department of Medical Psychology,, Muenster University Hospital - Department of General Paediatrics, University Hospital Magdeburg - Central German Competence Network for Rare Diseases, RWTH Aachen University - Department of Neurology, Johannes Gutenberg University Mainz - Institute of Human Genetics, Hannover Medical School - Centre for Rare Diseases, University Hospital of Tübingen - Department of Psychosomatics and Psychotherapy and Hannover Medical School - Department of Psychosomatic Medicine and Psychotherapy