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Nelma Veronica Marques Neuroendocrinology Research Center, Endocrinology Section, Medical School and Hospital Universitário Clementino Fraga Filho, Universidade Federal do Rio de Janeiro, Rio de Janeiro, Brazil

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Luiz Eduardo Armondi Wildemberg Neuroendocrinology Research Center, Endocrinology Section, Medical School and Hospital Universitário Clementino Fraga Filho, Universidade Federal do Rio de Janeiro, Rio de Janeiro, Brazil

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Monica R Gadelha Neuroendocrinology Research Center, Endocrinology Section, Medical School and Hospital Universitário Clementino Fraga Filho, Universidade Federal do Rio de Janeiro, Rio de Janeiro, Brazil

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Introduction Pasireotide long-acting release is a multireceptor-targeted somatostatin receptor ligand (SRL) approved to treat adult patients with acromegaly ( 1 ). In patients, this second-generation SRL has been shown to be effective in

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Elena Valassi Endocrinology/Medicine Department, Hospital Sant Pau, Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER, Unidad 747), IIB-Sant Pau, ISCIII and Universitat Autònoma de Barcelona (UAB), Barcelona, Spain

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Natalia García-Giralt URFOA, IMIM (Institut Hospital del Mar d’Investigacions Mèdiques), Universitat Autònoma de Barcelona, Barcelona, Spain

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Jorge Malouf Mineral Metabolism Unit, Medicine Department, Hospital Sant Pau, Barcelona, Spain

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Iris Crespo Endocrinology/Medicine Department, Hospital Sant Pau, Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER, Unidad 747), IIB-Sant Pau, ISCIII and Universitat Autònoma de Barcelona (UAB), Barcelona, Spain

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Jaume Llauger Radiology Department, Hospital Sant Pau, Barcelona, Spain

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Adolfo Díez-Pérez URFOA, IMIM (Institut Hospital del Mar d’Investigacions Mèdiques), Universitat Autònoma de Barcelona, Barcelona, Spain

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Susan M Webb Endocrinology/Medicine Department, Hospital Sant Pau, Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER, Unidad 747), IIB-Sant Pau, ISCIII and Universitat Autònoma de Barcelona (UAB), Barcelona, Spain

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of bone matrix and bone mass ( 1 ). Acromegaly (ACRO) is a rare disease caused by excessive GH production from a pituitary adenoma ( 4 ). Chronic elevation of GH and IGF1 in ACRO is associated with severe cardiovascular, respiratory and metabolic

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Hélène Lasolle Fédération d’Endocrinologie, Centre de Référence Maladies Rares Hypophysaires HYPO, Groupement Hospitalier Est, Hospices Civils de Lyon, Bron, France
Faculté de Médecine Lyon Est, Université Lyon 1, Lyon, France
INSERM U1052; CNRS UMR5286; Cancer Research Centre of Lyon, Lyon, France

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Amandine Ferriere Service d’endocrinologie, diabète et nutrition, Hôpital Haut Lévêque, CHU de Bordeaux, Bordeaux, France
UFR Sciences médicales, Université de Bordeaux, Bordeaux, France

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Alexandre Vasiljevic Faculté de Médecine Lyon Est, Université Lyon 1, Lyon, France
INSERM U1052; CNRS UMR5286; Cancer Research Centre of Lyon, Lyon, France
Centre de Pathologie et de Neuropathologie Est, Groupement Hospitalier Est, Hospices Civils de Lyon, Bron, France

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Sandrine Eimer UFR Sciences médicales, Université de Bordeaux, Bordeaux, France
Service d’anatomo-pathologie, Hopital Pellegrin, CHU de Bordeaux, Bordeaux, France

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Marie-Laure Nunes Service d’endocrinologie, diabète et nutrition, Hôpital Haut Lévêque, CHU de Bordeaux, Bordeaux, France

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Antoine Tabarin Service d’endocrinologie, diabète et nutrition, Hôpital Haut Lévêque, CHU de Bordeaux, Bordeaux, France
UFR Sciences médicales, Université de Bordeaux, Bordeaux, France

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Introduction Acromegaly is predominantly caused by a growth hormone (GH)-secreting pituitary adenoma resulting in excessive insulin-like growth factor-I (IGF-I) secretion that is responsible for numerous co-morbidities, reduced quality of life

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Elena V Varlamov Department of Medicine (Endocrinology, Diabetes and Clinical Nutrition), Oregon Health & Science University, Portland, Oregon, USA
Department of Neurological Surgery, Oregon Health & Science University, Portland, Oregon, USA
Pituitary Center, Oregon Health & Science University, Portland, Oregon, USA

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Dan Alexandru Niculescu Department of Neurological Surgery, Oregon Health & Science University, Portland, Oregon, USA

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Swechya Banskota Department of Medicine (Endocrinology, Diabetes and Clinical Nutrition), Oregon Health & Science University, Portland, Oregon, USA
Department of Neurological Surgery, Oregon Health & Science University, Portland, Oregon, USA
Pituitary Center, Oregon Health & Science University, Portland, Oregon, USA

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Simona Andreea Galoiu Department of Neurological Surgery, Oregon Health & Science University, Portland, Oregon, USA

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Catalina Poiana Department of Neurological Surgery, Oregon Health & Science University, Portland, Oregon, USA

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Maria Fleseriu Department of Medicine (Endocrinology, Diabetes and Clinical Nutrition), Oregon Health & Science University, Portland, Oregon, USA
Department of Neurological Surgery, Oregon Health & Science University, Portland, Oregon, USA
Pituitary Center, Oregon Health & Science University, Portland, Oregon, USA

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Introduction Acromegaly is a rare disease that is caused by excessive growth hormone (GH) secretion by a pituitary adenoma ( 1 , 2 , 3 ). The clinical picture of active acromegaly is characterized by a combination of symptoms, signs, and

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Adrian F Daly Department of Endocrinology, Centre Hospitalier Universitaire (CHU) de Liège, Liège Université, Domaine Universitaire du Sart-Tilman, Liège, Belgium

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Liliya Rostomyan Department of Endocrinology, Centre Hospitalier Universitaire (CHU) de Liège, Liège Université, Domaine Universitaire du Sart-Tilman, Liège, Belgium

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Daniela Betea Department of Endocrinology, Centre Hospitalier Universitaire (CHU) de Liège, Liège Université, Domaine Universitaire du Sart-Tilman, Liège, Belgium

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Jean-François Bonneville Department of Endocrinology, Centre Hospitalier Universitaire (CHU) de Liège, Liège Université, Domaine Universitaire du Sart-Tilman, Liège, Belgium

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Chiara Villa Department of Endocrinology, Centre Hospitalier Universitaire (CHU) de Liège, Liège Université, Domaine Universitaire du Sart-Tilman, Liège, Belgium
Department of Pathological Cytology and Anatomy, Foch Hospital, Paris, France

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Natalia S Pellegata Institute for Diabetes and Cancer, Helmholtz Zentrum München, Neuherberg, Germany

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Beatrice Waser Division of Cell Biology and Experimental Cancer Research, Institute of Pathology, University of Bern, Bern, Switzerland

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Jean-Claude Reubi Division of Cell Biology and Experimental Cancer Research, Institute of Pathology, University of Bern, Bern, Switzerland

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Catherine Waeber Stephan Clinique Générale Ste-Anne, Fribourg, Switzerland

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Emanuel Christ Department of Endocrinology, Diabetology and Metabolism, University Hospital Basel, University of Basel, Basel, Switzerland

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Albert Beckers Department of Endocrinology, Centre Hospitalier Universitaire (CHU) de Liège, Liège Université, Domaine Universitaire du Sart-Tilman, Liège, Belgium

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Introduction Acromegaly is a rare, classical endocrine disorder that is due to chronic excess secretion of growth hormone (GH) and insulin-like growth factor 1 (IGF-1) that has a prevalence of 1 in 8000–14,000 of the population ( 1 , 2 , 3

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Gudmundur Johannsson Department of Internal Medicine and Clinical Nutrition, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden

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Martin Bidlingmaier Medizinische Klinik und Poliklinik IV, Klinikum der Universität München, Munich, Germany

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Beverly M K Biller Neuroendocrine Unit, Massachusetts General Hospital, Boston, Massachusetts, USA

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Margaret Boguszewski Federal University of Parana, Curitiba, Brazil

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Felipe F Casanueva Department of Medicine, Complejo Hospitalario Universitario de Santiago, Santiago de Compostela, Spain

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Philippe Chanson Assistance Publique-Hôpitaux de Paris, and Inserm, Paris, France

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Peter E Clayton Developmental Biology & Medicine, Faculty of Biology, Medicine & Health, University of Manchester, Manchester, UK

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Catherine S Choong Department of Endocrinology, Princess Margaret Hospital & School of Medicine, University of Western Australia, Western Australia, Australia

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David Clemmons Department of Medicine, University of North Carolina, Chapel Hill, North Carolina, USA

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Mehul Dattani Great Ormond Street Institute of Child Health, London, UK

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Jan Frystyk Department of Endocrinology, Odense University Hospital, Odense, Denmark

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Ken Ho Princess Alexandra Hospital and University of Queensland, Brisbane, Australia

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Andrew R Hoffman Department of Medicine, Stanford University and VA Palo Health Care System, Palo Alto, California, USA

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Reiko Horikawa National Center for Child Health and Development, Tokyo, Japan

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Anders Juul Department of Growth and Reproduction, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark

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John J Kopchick Edison Biotechnology Institute and Heritage College of Osteopathic Medicine, Ohio University, Athens, Ohio, USA

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Xiaoping Luo Department of Pediatrics, Tongji Hospital, Tongji Medical College, Huazhong University of Science and Technology, Wuhan, Hubei, China

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Sebastian Neggers Section of Endocrinology, Department of Medicine, Pituitary Centre Rotterdam, Erasmus University Medical Centre, Rotterdam, the Netherlands

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Irene Netchine Service d’Explorations Fonctionnelles Endocriniennes, AP-HP, Hôpital Trousseau, Sorbonne Université, INSERM UMRs 938, Paris, France

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Daniel S Olsson Department of Endocrinology, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg and Sahlgrenska University Hospital, Gothenburg, Sweden

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Sally Radovick Rutgers University-Robert Wood Johnson Medical School, New Brunswick, New Jersey, USA

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Ron Rosenfeld Department of Pediatrics, Oregon Health Science University, Portland, Oregon, USA

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Richard J Ross University of Sheffield, Sheffield, UK

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Katharina Schilbach Medizinische Klinik und Poliklinik IV, Klinikum der Universität München, Munich, Germany

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Paulo Solberg Universidade do Estado do Rio de Janeiro, Rio de Janeiro, Brazil

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Christian Strasburger Charité-Universitätsmedizin, Berlin, Germany

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Peter Trainer The Christie NHS Foundation Trust, University of Manchester, Manchester, UK

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Kevin C J Yuen Barrow Pituitary Center, Barrow Neurological Institute, Department of Neuroendocrinology, University of Arizona College of Medicine, Phoenix, Arizona, USA

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Kerstin Wickstrom Medical Products Agency, Uppsala, Sweden

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Jens O L Jorgensen Aarhus University Hospital, Aarhus, Denmark

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on behalf of the Growth Hormone Research Society
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factor-I (IGF-I). Both are used diagnostically; IGF-I is used to monitor the effects of GH replacement in GH deficiency (GHD), and both GH and IGF-I are used in the diagnosis and management of acromegaly. While serum IGF-I level is used as a surrogate

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Sylvain Roumeau CHU de Clermont-Ferrand, Service d’Endocrinologie, Diabétologie et Maladies Métaboliques, Clermont-Ferrand, France
Université Clermont Auvergne, Faculté de Médecine, Clermont-Ferrand, France

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Joannice Thevenon CHU Clermont-Ferrand, Service d’Odontologie, Clermont-Ferrand, France

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Lemlih Ouchchane Université Clermont Auvergne, CNRS, ISIT, Clermont-Ferrand, France
CHU Clermont-Ferrand, Service de Biostatistiques, Clermont-Ferrand, France

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Salwan Maqdasy Université Clermont Auvergne, Faculté de Médecine, Clermont-Ferrand, France
CHU de Clermont-Ferrand, Service d’Endocrinologie, Diabétologie et Maladies Métaboliques, Clermont-Ferrand, France
Laboratoire GReD: UMR Université Clermont Auvergne-CNRS 6293, INSERM U1103, Clermont-Ferrand, France

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Marie Batisse-Lignier CHU de Clermont-Ferrand, Service d’Endocrinologie, Diabétologie et Maladies Métaboliques, Clermont-Ferrand, France
Laboratoire GReD: UMR Université Clermont Auvergne-CNRS 6293, INSERM U1103, Clermont-Ferrand, France

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Christian Duale Université Clermont Auvergne, Inserm, Neuro-Dol, Clermont-Ferrand, France
CHU Clermont-Ferrand, Inserm CIC 1405, Clermont-Ferrand, France

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Nathalie Pham Dang Université Clermont Auvergne, Faculté de Médecine, Clermont-Ferrand, France
Université Clermont Auvergne, Inserm, Neuro-Dol, Clermont-Ferrand, France
CHU de Clermont-Ferrand, Service de chirurgie maxillo-faciale, Clermont-Ferrand, France

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Philippe Caron CHU Larrey-Rangueil, Service Endocrinologie et Maladies Métaboliques, Pôle Cardio-Vasculaire et Métabolique, Toulouse, France

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Igor Tauveron CHU de Clermont-Ferrand, Service d’Endocrinologie, Diabétologie et Maladies Métaboliques, Clermont-Ferrand, France
Université Clermont Auvergne, Faculté de Médecine, Clermont-Ferrand, France
Laboratoire GReD: UMR Université Clermont Auvergne-CNRS 6293, INSERM U1103, Clermont-Ferrand, France

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Laurent Devoize CHU Clermont-Ferrand, Service d’Odontologie, Clermont-Ferrand, France
Université Clermont Auvergne, Inserm, Neuro-Dol, Clermont-Ferrand, France
Université Clermont Auvergne, Faculté de Chirurgie Dentaire, Clermont-Ferrand, France

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Introduction Oral and maxillofacial manifestations of acromegaly are hallmarks of the disease, including prognathism, inter-dental space enlargement (diastema), occlusion disorder (class III), temporo-mandibular joint pain, macroglossia and

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Anna-Pauliina Iivonen Institute of Biomedicine/Physiology, Biomedicum Helsinki, University of Helsinki, Helsinki, Finland

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Johanna Känsäkoski Institute of Biomedicine/Physiology, Biomedicum Helsinki, University of Helsinki, Helsinki, Finland

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Atte Karppinen Department of Neurosurgery, Helsinki University Hospital, Helsinki, Finland

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Leena Kivipelto Department of Neurosurgery, Helsinki University Hospital, Helsinki, Finland

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Camilla Schalin-Jäntti Department of Endocrinology, Abdominal Center, University of Helsinki and Helsinki University Hospital, Helsinki, Finland

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Auli Karhu Department of Medical and Clinical Genetics, RPU, Biomedicum Helsinki, University of Helsinki, Helsinki, Finland

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Taneli Raivio Institute of Biomedicine/Physiology, Biomedicum Helsinki, University of Helsinki, Helsinki, Finland

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inputs such as growth hormone-releasing hormone (GHRH) and somatostatin as well as several peripheral hormones. GH-secreting pituitary adenomas, i.e. somatotropinomas, lead to acromegaly in adults and (acro-) gigantism in children and adolescents

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Susan M Webb IIB-Sant Pau, Research Center for Pituitary Diseases, Barcelona, Spain
Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER, Unidad 747), ISCIII, Spain
Department of Endocrinology, Hospital de la Santa Creu i Sant Pau, Barcelona, Spain
Department of Medicine, Universitat Autònoma de Barcelona (UAB), Barcelona, Spain

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Jette Kristensen ePAG & Chair of Danish Addison Patient Association, Aarhus, Denmark

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Anna Nordenström Pediatric Endocrinology, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, Sweden

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Diana Vitali ePAG & Chair SOD ITALIA - Italian Patients Organization for Septo Optic Dysplasia and other Neuroendocrine Conditions, Rome, Italy

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Vincent Amodru Aix-Marseille Université, Institut National de la Santé et de la Recherche Médicale (INSERM), U1251, Marseille Medical Genetics, Institut MarMaRa, Marseille, France

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Lenja Katharina Wiehe EURORDIS - Rare Diseases Europe, Paris, France

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Matt Bolz-Johnson EURORDIS - Rare Diseases Europe, Paris, France

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identifying around half a dozen patients with either acromegaly, Addison’s disease or congenital adrenal hyperplasia and asked them to write down their experiences in a table template, initially created by EURORDIS, and reviewed and adapted by the authors for

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Prishila Fookeerah Department of Diabetes and Endocrinology, Westmead Hospital, Sydney, Australia
School of Medicine, Western Sydney University, Sydney, Australia

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Winny Varikatt Department of Tissue Pathology and Diagnostic Oncology, Westmead Hospital, Sydney, Australia
Westmead Clinical School, University of Sydney, Sydney, Australia

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Meena Shingde Department of Tissue Pathology and Diagnostic Oncology, Westmead Hospital, Sydney, Australia
Westmead Clinical School, University of Sydney, Sydney, Australia

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Mark A J Dexter Westmead Clinical School, University of Sydney, Sydney, Australia
Department of Neurosurgery, Westmead Hospital, Sydney, Australia

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Mark McLean Department of Diabetes and Endocrinology, Westmead Hospital, Sydney, Australia
School of Medicine, Western Sydney University, Sydney, Australia

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–132 years). Of the nine tumours, eight presented with acromegaly clinically. One tumour presented with visual field defects and only expressed gonadotrophins on immunostaining although without biochemical or clinical evidence of excess gonadotrophin

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