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Nella Augusta Greggio Endocrinology and Adolescence Unit, Department of Woman and Child Health, University of Padova, Padova, Italy

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Elisa Rossi CINECA – Interuniversity Consortium (Health Service), Bologna, Italy

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Silvia Calabria CORE srl – Collaborative Outcome Research, Bologna, Italy

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Alice Meneghin Endocrinology and Adolescence Unit, Department of Woman and Child Health, University of Padova, Padova, Italy

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Joaquin Gutierrez de Rubalcava Endocrinology and Adolescence Unit, Department of Woman and Child Health, University of Padova, Padova, Italy

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Carlo Piccinni CORE srl – Collaborative Outcome Research, Bologna, Italy

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Antonella Pedrini CORE srl – Collaborative Outcome Research, Bologna, Italy

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TSH (4.5–10 µU/mL) and those with a mild increase of TSH (>10 µU/mL). The risk of SH progression to overt hypothyroidism is less common in paediatric population and adolescents than that in adults (<1–20%) ( 4 , 7 ). Usually, children show a natural

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Suma Uday Department of Endocrinology and Diabetes, Birmingham Children’s Hospital, Birmingham, UK

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Ardita Kongjonaj MEAL Specialist at Save the Children International, Albania Country Office, Tirana, Albania

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Magda Aguiar Health Economics Unit, University of Birmingham, Birmingham, UK

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Ted Tulchinsky Braun School of Public Health and Community Medicine, and Ashkelon College, Ashkelon, Israel

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Wolfgang Högler Department of Endocrinology and Diabetes, Birmingham Children’s Hospital, Birmingham, UK
Institute of Metabolism and Systems Research, University of Birmingham, Birmingham, UK

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refugee crisis of 2015–2016, and the resulting longer term population demographic changes, Europe requires robust prevention programmes to protect the most vulnerable ( 6 ). However, there appears to be wide variation in the success of such vitamin D

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Ekaterina Koledova Biopharma Global Medical Affairs, General Medicine and Endocrinology, Merck KGaA, Darmstadt, Germany

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George Stoyanov Biopharma Global Medical Affairs, General Medicine and Endocrinology, Merck KGaA, Darmstadt, Germany

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Leroy Ovbude Business & Decision Life Sciences, Brussels, Woluwe-Saint-Lambert, Belgium

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Peter S W Davies Children’s Nutrition Research Centre, Faculty of Medicine, University of Queensland, Brisbane, Queensland, Australia

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adherence DAS population. The easypod device has been associated with good adherence among paediatric patients requiring GH treatment in previous shorter-term observational studies ( 12 , 16 , 17 ). In a 3-month study ( n  = 824), the recorded dose

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Nicola Tufton Department of Endocrinology, St Bartholomew’s Hospital, Barts Health NHS Trust, London, UK
Centre for Endocrinology, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK

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Lucy Shapiro Centre for Endocrinology, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK
Department of Paediatric Endocrinology, Royal London Hospital, Barts Health NHS Trust, London, UK

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Anju Sahdev Department of Radiology, St Bartholomew’s Hospital, Barts Health NHS Trust, London, UK

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Ajith V Kumar North East Thames Regional Genetics Service, Great Ormond Street Hospital, London, UK

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Lee Martin Department of Paediatric Endocrinology, Royal London Hospital, Barts Health NHS Trust, London, UK

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William M Drake Department of Endocrinology, St Bartholomew’s Hospital, Barts Health NHS Trust, London, UK
Centre for Endocrinology, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK

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Scott A Akker Department of Endocrinology, St Bartholomew’s Hospital, Barts Health NHS Trust, London, UK
Centre for Endocrinology, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK

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Helen L Storr Centre for Endocrinology, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK
Department of Paediatric Endocrinology, Royal London Hospital, Barts Health NHS Trust, London, UK

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Introduction Almost 40–50% of all phaeochromocytomas (PCC) and paragangliomas (PGL) (together known as PPGLs) are now thought to be associated with germline mutations ( 1 , 2 ), but within the paediatric population this figure is higher (70

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Kirsten Davidse Department of Internal Medicine-Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands

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Anneloes van Staa Research Centre Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, the Netherlands

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Wanda Geilvoet Department of Internal Medicine-Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands

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Judith P van Eck Department of Paediatric Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands

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Karlijn Pellikaan Department of Internal Medicine-Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands

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Janneke Baan Department of Internal Medicine-Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands

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Anita C S Hokken-Koelega Department of Paediatric Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands
Academic Centre for Growth, Erasmus University Medical Centre, Rotterdam, the Netherlands
Dutch Growth Research Foundation, Rotterdam, the Netherlands

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Erica L T van den Akker Department of Paediatric Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands

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Theo Sas Department of Paediatric Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands
Diabeter, National Diabetes Care and Research Centre, Rotterdam, the Netherlands

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Sabine E Hannema Department of Paediatric Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands
Department of Paediatrics, Leiden University Medical Centre, Leiden, the Netherlands

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Aart Jan van der Lely Department of Internal Medicine-Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands

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Laura C G de Graaff Department of Internal Medicine-Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands
Academic Centre for Growth, Erasmus University Medical Centre, Rotterdam, the Netherlands

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transfer from paediatric care (PC) to adult care (AC) ( 2 , 3 ). The entire dynamic process in which the paediatric patient is guided towards AC is called ‘transition’, whereas ‘transfer’ is the moment when the patient leaves PC and AC takes over. The

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Anita Hokken-Koelega Erasmus University Medical Centre, Rotterdam, The Netherlands

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Aart-Jan van der Lely Erasmus University Medical Centre, Rotterdam, The Netherlands

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Berthold Hauffa University Children’s Hospital, Essen, Germany

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Gabriele Häusler Medical University and General Hospital of Vienna, Vienna, Austria

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Gudmundur Johannsson Sahlgrenska University Hospital, Göteborg, Sweden

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Mohamad Maghnie Istituto Giannina Gaslini, University of Genova, Genova, Italy

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Jesús Argente Hospital Infantil Universitario Niño Jesús, Madrid, Spain

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Jean DeSchepper University Hospital Brussels, Brussels, Belgium

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Helena Gleeson Queen Elizabeth Hospital, Birmingham, UK

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John W Gregory Cardiff University School of Medicine, Cardiff, UK

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Charlotte Höybye Department of Molecular Medicine and Surgery, Karolinska Institute and Department of Endocrinology, Metabolism and Diabetology, Karolinska University Hospital, Stockholm, Sweden

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Fahrettin Keleştimur Department of Endocrinology, School of Medicine, Erciyes University, Kayseri, Turkey

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Anton Luger Sahlgrenska University Hospital, Göteborg, Sweden

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Hermann L Müller Department of Pediatrics, Klinikum Oldenburg, Medical Campus University Oldenburg, Oldenburg, Germany

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Sebastian Neggers University Children’s Hospital, Essen, Germany

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Vera Popovic-Brkic Belgrade University School of Medicine, Belgrade, Serbia

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Eleonora Porcu University of Bologna, Bologna, Italy

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Lars Sävendahl Department of Women’s and Children’s Health, Karolinska Institutet, and Pediatric Endocrinology Unit, Karolinska University Hospital, Stockholm, Sweden

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Stephen Shalet The Christie Hospital, Manchester, UK

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Bessie Spiliotis University of Patras School of Medicine, Patras, Greece

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Maithé Tauber Hôpital des Enfants, Toulouse, France

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time when patients want most to fit in with their peers, endocrine disorders that are not optimally managed may render patients with short stature, stunted puberty and sexual maturation, morbid obesity, and metabolic abnormalities. Paediatric and

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S R Ali Developmental Endocrinology Research Group, School of Medicine, Dentistry & Nursing, University of Glasgow, Glasgow, UK
Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK

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J Bryce Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK

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A L Priego-Zurita Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands

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M Cherenko Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands

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C Smythe Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK

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T M de Rooij Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands

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M Cools Department of Internal Medicine and Paediatrics, Ghent University, Belgium
Department of Paediatric Endocrinology, Ghent University Hospital, Ghent, Belgium

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T Danne Diabetes Center AUF DER BULT, Hannover, Germany

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H Katugampola UCL GOS Institute of Child Health, London

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O M Dekkers Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands
Department of Medicine & Clinical Epidemiology, Leiden University Medical Centre, Leiden, the Netherlands

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O Hiort Division of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University of Lübeck, Lübeck, Germany

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A Linglart AP-HP, Université Paris Saclay, INSERM, Bicêtre Paris Saclay Hospital, le Kremlin Bicêtre, France

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I Netchine Sorbonne Université, Inserm, Centre de recherche Sainte Antoine, APHP, Hôpital des Enfants Armand Trousseau, Paris, France

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A Nordenstrom Pediatric Endocrinology, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden

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P Attila Clinical Genetics and Endocrinology Laboratory, Department of Laboratory Medicine, Semmelweis University, Budapest, Hungary

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L Persani Department of Endocrine and Metabolic Diseases, Istituto Auxologico Italiano IRCCS, Milan, Italy
Department of Medical Biotechnology and Translational Medicine, University of Milan, Milan, Italy

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N Reisch Endokrinologie, Medizinische Klinik Innenstadt und Poliklinik IV, Klinikum der Universität München, Munich, Germany

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A Smyth Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK

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Z Sumnik Department of Pediatrics, Motol University Hospital and 2nd Faculty of Medicine, Charles University, Prague, Czech Republic

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D Taruscio National Centre for Rare Diseases, Istituto Superiore di Sanità, Rome, Italy

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W E Visser Erasmus Medical Centre, Department of Internal Medicine, Academic Centre for Thyroid Diseases, Rotterdam, the Netherlands

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A M Pereira Department of Endocrinology and Metabolism, Amsterdam University Medical Centres, University of Amsterdam, Amsterdam, the Netherlands
Amsterdam Gastroenterology Endocrinology and Metabolism, Amsterdam, the Netherlands

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N M Appelman-Dijkstra Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands

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S F Ahmed Developmental Endocrinology Research Group, School of Medicine, Dentistry & Nursing, University of Glasgow, Glasgow, UK
Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK
Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands

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and population registries may not cover rare endocrine conditions at a sufficiently granular level to provide data on occurrence of specific diagnoses that can be compared at an international level and that are relevant to stakeholders such as patients

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David S McLaren Department of Endocrinology, Leeds Centre for Diabetes & Endocrinology, Leeds Teaching Hospital NHS Trust, Leeds, UK

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Aarani Devi Clinical Oncology, Leeds Cancer Centre, Leeds Teaching Hospital NHS Trust, Leeds, UK

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Nikolaos Kyriakakis Department of Endocrinology, Leeds Centre for Diabetes & Endocrinology, Leeds Teaching Hospital NHS Trust, Leeds, UK

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Michelle Kwok-Williams Clinical Oncology, Leeds Cancer Centre, Leeds Teaching Hospital NHS Trust, Leeds, UK

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Robert D Murray Department of Endocrinology, Leeds Centre for Diabetes & Endocrinology, Leeds Teaching Hospital NHS Trust, Leeds, UK
Division of Cardiovascular and Diabetes Research, Leeds Institute of Cardiovascular and Metabolic Medicine (LICAMM), University of Leeds, Leeds, UK

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). Evolution of conventional XRT The paediatric population, due to their growth and development potential, is particularly sensitive to radiation-induced side effects. Competing objectives to maximise cure and minimise toxicity including late effects are

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Raja Padidela Royal Manchester Children’s Hospital and Faculty of Biology, Medicine and Health, University of Manchester, Manchester, UK

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Moira S Cheung Evelina London Children’s Hospital, London, UK

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Vrinda Saraff Birmingham Women’s and Children’s Hospital, Birmingham, UK

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Poonam Dharmaraj Alder Hey Children’s NHS Foundation Trust, Liverpool, UK

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approved burosumab for treatment of XLH in paediatric patients 6 months of age and older and adult. The NICE recommendation in UK is not population restricted beyond the indication of the EMA licence, so both newly diagnosed XLH patients and those currently

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Enora Le Roux Université de Paris, ECEVE UMR 1123, Inserm, Paris, France
AP-HP.Nord-Université de Paris, Hôpital Universitaire Robert Debré, Unité d’Épidémiologie Clinique, Inserm, Paris, France

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Florence Menesguen AP-HP. Sorbonne Université, Hôpital Universitaire Pitié Salpêtrière-Charles Foix, Service d’Endocrinologie et Médecine de la Reproduction, Centre de Maladies Endocriniennes Rares de la Croissance et du Développement, Centre de Pathologies Gynécologiques Rares, Paris, France

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Isabelle Tejedor AP-HP. Sorbonne Université, Hôpital Universitaire Pitié Salpêtrière-Charles Foix, Service d’Endocrinologie et Médecine de la Reproduction, Centre de Maladies Endocriniennes Rares de la Croissance et du Développement, Centre de Pathologies Gynécologiques Rares, Paris, France

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Marc Popelier AP-HP. Sorbonne Université, Hôpital Universitaire Pitié Salpêtrière-Charles Foix, Service de Diabétologie, Paris, France

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Marine Halbron AP-HP. Sorbonne Université, Hôpital Universitaire Pitié Salpêtrière-Charles Foix, Service de Diabétologie, Paris, France

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Pauline Faucher AP-HP. Sorbonne Université, Hôpital Universitaire Pitié Salpêtrière-Charles Foix, Service de Nutrition, Centre du Syndrome de Prader-Willi et Autres Obésités Rares, Paris, France

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Sabine Malivoir AP-HP. Sorbonne Université, Hôpital Universitaire Pitié Salpêtrière-Charles Foix, Service d’Endocrinologie et Médecine de la Reproduction, Centre de Maladies Endocriniennes Rares de la Croissance et du Développement, Centre de Pathologies Gynécologiques Rares, Paris, France

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Graziella Pinto AP-HP.Université de Paris Centre, Hôpital Universitaire Necker Enfants Malades, Département d’Endocrinologie, Diabétologie et Gynécologie Pédiatrique, Paris, France; Centre de Maladies Endocriniennes Rares de la Croissance et du Développement, Centre de Pathologies Gynécologiques Rares, Paris, France

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Juliane Léger AP-HP.Nord-Université de Paris, Hôpital Universitaire Robert Debré, Service d’Endocrinologie Diabétologie Pédiatrique, Centre de Référence des Maladies Endocriniennes de la Croissance et du Développement, Paris, France

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Stephane Hatem Institute of Cardiology and Nutrition, Paris, France

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Michel Polak AP-HP.Université de Paris Centre, Hôpital Universitaire Necker Enfants Malades, Département d’Endocrinologie, Diabétologie et Gynécologie Pédiatrique, Paris, France; Centre de Maladies Endocriniennes Rares de la Croissance et du Développement, Centre de Pathologies Gynécologiques Rares, Paris, France

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Christine Poitou AP-HP. Sorbonne Université, Hôpital Universitaire Pitié Salpêtrière-Charles Foix, Service de Nutrition, Centre du Syndrome de Prader-Willi et Autres Obésités Rares, Paris, France

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Philippe Touraine AP-HP. Sorbonne Université, Hôpital Universitaire Pitié Salpêtrière-Charles Foix, Service d’Endocrinologie et Médecine de la Reproduction, Centre de Maladies Endocriniennes Rares de la Croissance et du Développement, Centre de Pathologies Gynécologiques Rares, Paris, France

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organs affected, the age of disclosure and the need for paramedical or social care and support. In recent decades, the survival rate of these paediatric patients has improved, and their care pathway now involves a transition to adult care around their

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