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S R Ali
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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Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK
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J Bryce
J Bryce
Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK
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A L Priego-Zurita
A L Priego-Zurita
Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands
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M Cherenko
M Cherenko
Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands
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C Smythe
C Smythe
Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK
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T M de Rooij
T M de Rooij
Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands
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M Cools
M Cools
Department of Internal Medicine and Paediatrics, Ghent University, Belgium
Department of Paediatric Endocrinology, Ghent University Hospital, Ghent, Belgium
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Department of Paediatric Endocrinology, Ghent University Hospital, Ghent, Belgium
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T Danne
T Danne
Diabetes Center AUF DER BULT, Hannover, Germany
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H Katugampola
H Katugampola
UCL GOS Institute of Child Health, London
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O M Dekkers
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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Department of Medicine & Clinical Epidemiology, Leiden University Medical Centre, Leiden, the Netherlands
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O Hiort
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
A Linglart
AP-HP, Université Paris Saclay, INSERM, Bicêtre Paris Saclay Hospital, le Kremlin Bicêtre, France
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I Netchine
I Netchine
Sorbonne Université, Inserm, Centre de recherche Sainte Antoine, APHP, Hôpital des Enfants Armand Trousseau, Paris, France
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A Nordenstrom
A Nordenstrom
Pediatric Endocrinology, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden
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P Attila
P Attila
Clinical Genetics and Endocrinology Laboratory, Department of Laboratory Medicine, Semmelweis University, Budapest, Hungary
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L Persani
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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Department of Medical Biotechnology and Translational Medicine, University of Milan, Milan, Italy
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N Reisch
N Reisch
Endokrinologie, Medizinische Klinik Innenstadt und Poliklinik IV, Klinikum der Universität München, Munich, Germany
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A Smyth
A Smyth
Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK
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Z Sumnik
Z Sumnik
Department of Pediatrics, Motol University Hospital and 2nd Faculty of Medicine, Charles University, Prague, Czech Republic
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D Taruscio
D Taruscio
National Centre for Rare Diseases, Istituto Superiore di Sanità, Rome, Italy
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W E Visser
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
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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Amsterdam Gastroenterology Endocrinology and Metabolism, Amsterdam, the Netherlands
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N M Appelman-Dijkstra
N M Appelman-Dijkstra
Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands
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S F Ahmed
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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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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Introduction The field of clinical endocrinology covers a very wide range of rare conditions. However, clear information on the incidence and prevalence of these conditions is lacking. By pooling standardised information from several sources
Amir H Zamanipoor Najafabadi
Amir H Zamanipoor Najafabadi
Department of Ophthalmology, Leiden University Medical Center, Leiden, The Netherlands
Department of Medicine, Division of Endocrinology and Centre for Endocrine Tumors, Leiden University Medical Centre, Leiden, The Netherlands
Department of Neurosurgery, University Neurosurgical Centre Holland (UNCH), Leiden University Medical Centre, Haaglanden Medical Centre and Haga Teaching Hospitals, Leiden and The Hague, The Netherlands
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Department of Medicine, Division of Endocrinology and Centre for Endocrine Tumors, Leiden University Medical Centre, Leiden, The Netherlands
Department of Neurosurgery, University Neurosurgical Centre Holland (UNCH), Leiden University Medical Centre, Haaglanden Medical Centre and Haga Teaching Hospitals, Leiden and The Hague, The Netherlands
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Merel van der Meulen
Merel van der Meulen
Department of Medicine, Division of Endocrinology and Centre for Endocrine Tumors, Leiden University Medical Centre, Leiden, The Netherlands
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Ana Luisa Priego Zurita
Ana Luisa Priego Zurita
Department of Medicine, Division of Endocrinology and Centre for Endocrine Tumors, Leiden University Medical Centre, Leiden, The Netherlands
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S Faisal Ahmed
S Faisal Ahmed
Chair of Work Package of E-Health & ICT of Endo-ERN, Developmental Endocrinology Research Group, School of Medicine, Dentistry & Nursing, University of Glasgow and Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK
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Wouter R van Furth
Wouter R van Furth
Department of Ophthalmology, Leiden University Medical Center, Leiden, The Netherlands
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Evangelia Charmandari
Evangelia Charmandari
Pediatric Chair Main Thematic Group 6 Pituitary of Endo-ERN, Division of Endocrinology, Metabolism and Diabetes, First Department of Pediatrics, National and Kapodistrian University of Athens Medical School, ‘Aghia Sophia’ Children’s Hospital, Athens, Greece
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Olaf Hiort
Olaf Hiort
Pediatric Chair and Deputy Coordinator of Endo-ERN, Division of Pediatric Endocrinology and Diabetes, Department of Pediatrics and Adolescent Medicine, University of Lübeck, Lübeck, Germany
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Alberto M Pereira
Alberto M Pereira
Adult Chair and Coordinator of Endo-ERN, Department of Endocrinology and Metabolism, Amsterdam University Medical Center, Amsterdam, The Netherlands
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Mehul Dattani
Mehul Dattani
London Centre for Pediatric Endocrinology and Diabetes at Great Ormond Street Children's Hospital and University College London Hospitals, London, UK
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Diana Vitali
Diana Vitali
SOD ITALIA (Italian Organization for Septo Optic Dysplasia and other Neuroendocrine Disorders), European Patient Advocacy Group, Rome, Italy
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Johan P de Graaf
Johan P de Graaf
Dutch Pituitary Foundation, European Patient Advocacy Group, Nijkerk, The Netherlands
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Nienke R Biermasz
Nienke R Biermasz
Adult Chair Main Thematic Group 6 Pituitary of Endo-ERN, Department of Medicine, Division of Endocrinology and Centre for Endocrine Tumors, Leiden University Medical Centre, Leiden, The Netherlands
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these rare conditions ( 1 ). Eight main thematic disease groups (MTGs) define the European landscape of rare endocrine conditions. MTG6, ‘Pituitary’, includes three subthemes: pituitary adenoma, congenital hypopituitarism, and acquired hypopituitarism
Savi R Shishkov
Savi R Shishkov
Department of Endocrinology, Medical University of Varna, Clinic of Endocrinology, UMHAT “Sveta Marina”, Varna, Bulgaria
Division of Endocrinology, Department of Medicine, Leiden University Medical Center, Leiden, the Netherlands
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Division of Endocrinology, Department of Medicine, Leiden University Medical Center, Leiden, the Netherlands
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Luigi Tuccillo
Luigi Tuccillo
Division of Endocrinology, Department of Medicine, Leiden University Medical Center, Leiden, the Netherlands
Università “Federico II” di Napoli, Dipartimento di Medicina Clinica e Chirurgia, Sezione di Endocrinologia, Naples, Italy
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Università “Federico II” di Napoli, Dipartimento di Medicina Clinica e Chirurgia, Sezione di Endocrinologia, Naples, Italy
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Violeta M Iotova
Violeta M Iotova
Department of Pediatrics, Medical University of Varna, First Pediatric Clinic with Intensive Care, UMHAT “Sveta Marina”, Varna, Bulgaria
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Rosario Pivonello
Rosario Pivonello
Università “Federico II” di Napoli, Dipartimento di Medicina Clinica e Chirurgia, Sezione di Endocrinologia, Naples, Italy
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Iris CM Pelsma
Iris CM Pelsma
Division of Endocrinology, Department of Medicine, Leiden University Medical Center, Leiden, the Netherlands
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Alberto M Pereira
Alberto M Pereira
Division of Endocrinology, Department of Medicine, Leiden University Medical Center, Leiden, the Netherlands
Department of Endocrinology and Metabolism, Amsterdam Gastroenterology Endocrinology & Metabolism, Amsterdam University Medical Centre, University of Amsterdam, Amsterdam, Netherlands
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Department of Endocrinology and Metabolism, Amsterdam Gastroenterology Endocrinology & Metabolism, Amsterdam University Medical Centre, University of Amsterdam, Amsterdam, Netherlands
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Nienke R Biermasz
Nienke R Biermasz
Division of Endocrinology, Department of Medicine, Leiden University Medical Center, Leiden, the Netherlands
Adult Chair of MTG Pituitary of Endo-ERN
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Adult Chair of MTG Pituitary of Endo-ERN
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the Endo-ERN Reference Centers of the Main Thematic Group: Hypothalamic and Pituitary Conditions, Endo-ERN Pituitary Transition of Care Study Group
the Endo-ERN Reference Centers of the Main Thematic Group: Hypothalamic and Pituitary Conditions, Endo-ERN Pituitary Transition of Care Study Group
the Endo-ERN Reference Centers of the Main Thematic Group: Hypothalamic and Pituitary Conditions, Endo-ERN Pituitary Transition of Care Study Group
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. Conclusion To date, the clinical practice of transition of care for patients with hypothalamic and pituitary conditions varies greatly, even in expert RCs endorsed by Endo-ERN for the diagnosis, treatment, and management of these specific rare conditions
