E K White
E K White
Division of Endocrinology and Centre for Endocrine Tumors, Department of Medicine, Leiden University Medical Centre, Leiden, The Netherlands
Faculty of Medicine Division 2, Internal Medicine Endocrinology, Leiden University Medical Centre, Leiden, The Netherlands
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Faculty of Medicine Division 2, Internal Medicine Endocrinology, Leiden University Medical Centre, Leiden, The Netherlands
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I V Wagner
I V Wagner
Department of Endocrinology & Metabolism, Amsterdam University Medical Centre, Amsterdam, The Netherlands
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C van Beuzekom
C van Beuzekom
Division of Endocrinology and Centre for Endocrine Tumors, Department of Medicine, Leiden University Medical Centre, Leiden, The Netherlands
Faculty of Medicine Division 2, Internal Medicine Endocrinology, Leiden University Medical Centre, Leiden, The Netherlands
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Faculty of Medicine Division 2, Internal Medicine Endocrinology, Leiden University Medical Centre, Leiden, The Netherlands
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V Iotova
V Iotova
Division of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University of Lübeck, Lübeck, Germany
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S F Ahmed
S F Ahmed
Office for Rare Conditions, University of Glasgow, Glasgow, UK
Department of Paediatrics, UMHAT ‘Sveta Marina’ Varna, Medical University of Varna, Varna, Bulgaria
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Department of Paediatrics, UMHAT ‘Sveta Marina’ Varna, Medical University of Varna, Varna, Bulgaria
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O Hiort
O Hiort
Department of Endocrinology & Metabolism, Amsterdam University Medical Centre, Amsterdam, The Netherlands
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A M Pereira
A M Pereira
Faculty of Medicine Division 2, Internal Medicine Endocrinology, Leiden University Medical Centre, Leiden, The Netherlands
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. Modified, with permission, as depicted by Mönig et al. 2021 ( 3 ) from the Endo-ERN Clinical Patient Management System ( https://endo-ern.eu/activities/clinical-activities-ehealth/cpms/ ). Copyright Endo-ERN CPMS Operational Helpdesk. In total, 24
S C Clement
S C Clement
Department of Pediatrics, Emma Children’s Hospital, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, The Netherlands
Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital/ University Medical Center Utrecht, Utrecht, The Netherlands
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Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital/ University Medical Center Utrecht, Utrecht, The Netherlands
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W E Visser
W E Visser
Academic Center For Thyroid Disease, Department of Internal Medicine, Erasmus Medical Center, Rotterdam, The Netherlands
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C A Lebbink
C A Lebbink
Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital/ University Medical Center Utrecht, Utrecht, The Netherlands
Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
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Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
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D Albano
D Albano
Department of Nuclear Medicine, University of Brescia and Spedali Civili of Brescia, Brescia, Italy
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H L Claahsen-van der Grinten
H L Claahsen-van der Grinten
Department of Pediatrics, Radboud University Medical Center, Amalia Children's Hospital, Nijmegen, The Netherlands
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A Czarniecka
A Czarniecka
The Oncologic and Reconstructive Surgery Clinic, M. Sklodowska-Curie National Research Institute of Oncology Gliwice Branch, Gliwice, Poland
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R P Dias
R P Dias
Department of Endocrinology and Diabetes, Birmingham Children’s Hospital, Birmingham Women’s, and Children’s NHS Foundation Trust, Birmingham, UK
Institute of Metabolism and Systems Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK
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Institute of Metabolism and Systems Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK
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M P Dierselhuis
M P Dierselhuis
Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
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I Dzivite-Krisane
I Dzivite-Krisane
Department of Pediatric Endocrinology, Children's Clinical University Hospital, Riga, Latvia
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R Elisei
R Elisei
Endocrine Unit, Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy
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A Garcia-Burillo
A Garcia-Burillo
Nuclear Medicine Department, Vall d'Hebron University Hospital, Barcelona, Spain
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L Izatt
L Izatt
Department of Clinical Genetics, Guy's and St Thomas’ NHS Foundation Trust, London, UK
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C Kanaka-Gantenbein
C Kanaka-Gantenbein
Division of Endocrinology, Diabetes, and Metabolism, First Department of Pediatrics National and Kapodistrian University of Athens Medical School, Aghia Sophia Children's Hospital, Athens, Greece
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H Krude
H Krude
Institute of Experimental Pediatric Endocrinology, Charité - Universitätsmedizin, Berlin, Germany
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L Lamartina
L Lamartina
Department of Endocrine Oncology, Gustave Roussy, Villejuif, France
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K Lorenz
K Lorenz
Department of Visceral, Vascular and Endocrine Surgery, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany
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M Luster
M Luster
Department of Nuclear Medicine, University Hospital Marburg, Marburg, Germany
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R Navardauskaitė
R Navardauskaitė
Department of Endocrinology, Lithuanian University of Health Sciences, Kaunas, Lithuania
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M Negre Busó
M Negre Busó
Nuclear Medicine Service - Institut de diagnòstic per la Imatge, Hospital Universitari de Girona Dr. Josep Trueta, Girona, Spain
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K Newbold
K Newbold
Thyroid Therapy Unit, The Royal Marsden NHS Foundation Trust Hospital, London, UK
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R P Peeters
R P Peeters
Academic Center For Thyroid Disease, Department of Internal Medicine, Erasmus Medical Center, Rotterdam, The Netherlands
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G Pellegriti
G Pellegriti
Endocrinology, Endocrinology Division, Garibaldi-Nesima Medical Center, Catania, Italy
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A Piccardo
A Piccardo
Department of Nuclear Medicine, EO Ospedali Galliera, Genoa, Italy
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A L Priego
A L Priego
Department of Medicine, Division of Endocrinology, Leiden, University medical Center, Leiden, The Netherlands
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A Redlich
A Redlich
Pediatric Oncology Department, Otto von Guericke University Children's Hospital, Magdeburg, Germany
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L de Sanctis
L de Sanctis
Regina Margherita Children Hospital - Department of Public Health and Pediatric Sciences, University of Torino, Torino, Italy
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M Sobrinho-Simões
M Sobrinho-Simões
University Hospital of São João, Medical Faculty and Institute of Molecular Pathology and Immunology, University of Porto, Porto, Portugal
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A S P van Trotsenburg
A S P van Trotsenburg
Department of Pediatric Endocrinology, Emma Children’s Hospital, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, The Netherlands
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F A Verburg
F A Verburg
Department of Radiology & Nuclear Medicine, Erasmus MC Rotterdam, Rotterdam, The Netherlands
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M Vriens
M Vriens
Department of Endocrine Surgery, University Medical Center Utrecht, Utrecht, The Netherlands
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T P Links
T P Links
Department of Endocrinology, University Medical Center Groningen, Groningen, The Netherlands
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S F Ahmed
S F Ahmed
Endocrinology, Endocrinology Division, Garibaldi-Nesima Medical Center, Catania, Italy
Developmental Endocrinology Research Group, Royal Hospital for Children, University of Glasgow, Glasgow, UK
Office for Rare Conditions, University of Glasgow, Glasgow, UK
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Developmental Endocrinology Research Group, Royal Hospital for Children, University of Glasgow, Glasgow, UK
Office for Rare Conditions, University of Glasgow, Glasgow, UK
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H M van Santen
H M van Santen
Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital/ University Medical Center Utrecht, Utrecht, The Netherlands
Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
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Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
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). 2021: On December 15, an ENDO-ERN/ETA-CRN webinar was organized on the ‘ETA recommendations for pediatric thyroid nodules and DTC’. 2022: Initiative to perform a pooled analysis from different European cohorts, to provide a comprehensive
Christine Poitou
Christine Poitou
Assistance Publique-Hôpitaux de Paris, Centre de référence Maladies Rares (PRADORT, Syndrome de Prader-Willi et autres formes rares d’obésité avec troubles du comportement alimentaire), Service de Nutrition, Hôpital Pitié-Salpêtrière, Paris, France
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Anthony Holland
Anthony Holland
Department of Psychiatry, University of Cambridge, UK
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Charlotte Höybye
Charlotte Höybye
Department of Endocrinology and Department of Molecular Medicine and Surgery, Karolinska University Hospital and Karolinska Institute, Stockholm, Sweden
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Laura C G de Graaff
Laura C G de Graaff
Center for Adults with Rare Genetic Syndromes, Department of Internal Medicine, Division of Endocrinology, Erasmus Medical Center, University Medical Center Rotterdam, Rotterdam, The Netherlands
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Sandrine Bottius
Sandrine Bottius
Assistance Publique-Hôpitaux de Paris, Centre de référence Maladies Rares (PRADORT, Syndrome de Prader-Willi et autres formes rares d’obésité avec troubles du comportement alimentaire), Service de Nutrition, Hôpital Pitié-Salpêtrière, Paris, France
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Berit Otterlei
Berit Otterlei
Landsforeningen for Prader-Willis Syndrom Hiltonåsen, Slependen, Norway
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Maithé Tauber
Maithé Tauber
Centre de référence Maladies Rares (PRADORT, Syndrome de Prader-Willi et autres formes rares d’obésité avec troubles du comportement alimentaire), Service d’Endocrinologie, Obésités, Maladies Osseuses, Génétique et Gynécologie Médicale, Hôpital des Enfants, Toulouse, France
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-up. The Main Thematic Group 5 ‘growth and obesity’ of the Endo-ERN ( https://endo-ern.eu/specific-expertise/growth-general-obesity-syndromes/ ) organized a webinar on November 16, 2021, and convened experts on the disease to address the transition of care
Hanna F Nowotny
Hanna F Nowotny
Medizinische Klinik IV, Department of Endocrinology, Klinikum der Universität München, Munich, Germany
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Jillian Bryce
Jillian Bryce
Office for Rare Conditions, University of Glasgow, Glasgow, UK
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Salma R Ali
Salma R Ali
Office for Rare Conditions, University of Glasgow, Glasgow, UK
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Roberta Giordano
Roberta Giordano
Department of Clinical and Biological Sciences, University of Turin, Turin, Italy
Division of Endocrinology, Diabetes and Metabolism, Department of Medical Sciences, University of Turin, Turin, Italy
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Division of Endocrinology, Diabetes and Metabolism, Department of Medical Sciences, University of Turin, Turin, Italy
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Federico Baronio
Federico Baronio
Pediatric Unit, Department Hospital of Woman and Child, Endo-ERN Centre IT11, IRCSS AOU S.Orsola-Malpighi University Hospital, Bologna, Italy
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Irina Chifu
Irina Chifu
Division of Endocrinology and Diabetology, Department of Internal Medicine I, University Hospital of Wuerzburg, University of Wuerzburg, Wuerzburg, Germany
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Lea Tschaidse
Lea Tschaidse
Medizinische Klinik IV, Department of Endocrinology, Klinikum der Universität München, Munich, Germany
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Martine Cools
Martine Cools
Department of Paediatric Endocrinology, Ghent University Hospital, University of Ghent, Ghent, Belgium
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Erica LT van den Akker
Erica LT van den Akker
Department of Pediatrics, Division of Pediatric Endocrinology, Erasmus MC - Sophia Children’s Hospital, Erasmus University Medical Center, Rotterdam, The Netherlands
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Henrik Falhammar
Henrik Falhammar
Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden
Department of Endocrinology, Karolinska University Hospital, Stockholm, Sweden
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Department of Endocrinology, Karolinska University Hospital, Stockholm, Sweden
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Natasha M Appelman-Dijkstra
Natasha M Appelman-Dijkstra
Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, The Netherlands
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Luca Persani
Luca 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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Guglielmo Beccuti
Guglielmo Beccuti
Department of Clinical and Biological Sciences, University of Turin, Turin, Italy
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Ian L Ross
Ian L Ross
Division of Endocrinology, Department of Medicine, University of Cape Town, Cape Town, South Africa
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Simona Grozinsky-Glasberg
Simona Grozinsky-Glasberg
Neuroendocrine Tumor Unit, ENETS Center of Excellence, Department of Endocrinology and Metabolism, Hadassah Medical Organisation and Faculty of Medicine, the Hebrew University, Jerusalem, Israel
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Alberto M Pereira
Alberto M Pereira
Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, The Netherlands
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Eystein S Husebye
Eystein S Husebye
Department of Clinical Science and KG Jebsen Center for Autoimmune Disorders, University of Bergen, Bergen, Norway
Department of Medicine, Haukeland University Hospital, Bergen, Norway
Department of Medicine, Karolinska Institutet, Stockholm, Sweden
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Department of Medicine, Haukeland University Hospital, Bergen, Norway
Department of Medicine, Karolinska Institutet, Stockholm, Sweden
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Stefanie Hahner
Stefanie Hahner
Division of Endocrinology and Diabetology, Department of Internal Medicine I, University Hospital of Wuerzburg, University of Wuerzburg, Wuerzburg, Germany
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S Faisal Ahmed
S Faisal Ahmed
Office for Rare Conditions, University of Glasgow, Glasgow, UK
Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, The Netherlands
Developmental Endocrinology Research Group, University of Glasgow, Glasgow, United Kingdom
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Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, The Netherlands
Developmental Endocrinology Research Group, University of Glasgow, Glasgow, United Kingdom
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Nicole Reisch
Nicole Reisch
Medizinische Klinik IV, Department of Endocrinology, Klinikum der Universität München, Munich, Germany
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–2020) and supported by ENDO-ERN (European Reference Network on Rare Endocrine Conditions), European Society of Endocrinology (ESE) and European Society for Paediatric Endocrinology (ESPE) and is open to all centres across the world. Following a discussion
Johan G Beun
Johan G Beun
AdrenalNET, The Netherlands
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Pia Burman
Pia Burman
Department of Endocrinology, Skåne University Hospital, Lund University, Sweden
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Olle Kämpe
Olle Kämpe
Department of Medicine (Solna), Centre for Molecular Medicine, Karolinska Institutet, Stockholm, Sweden
Department of Endocrinology, Diabetes and Metabolism, Karolinska University Hospital, Stockholm, Sweden
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Department of Endocrinology, Diabetes and Metabolism, Karolinska University Hospital, Stockholm, Sweden
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Eystein S Husebye
Eystein S Husebye
Department of Clinical Science, University of Bergen, Bergen, Norway
Department of Medicine, Haukeland University Hospital, Bergen, Norway
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Department of Medicine, Haukeland University Hospital, Bergen, Norway
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Stephanie Hahner
Stephanie Hahner
Division of Endocrinology and Diabetes, University Hospital of Wuerzburg, Germany
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Jette Kristensen
Jette Kristensen
Addison Foreningen i Danmark, Denmark
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Alida Noordzij
Alida Noordzij
AdrenalNET, The Netherlands
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Per Dahlqvist
Per Dahlqvist
Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden
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practitioners) published stress instructions to prevent adrenal crises, which were later adopted by the European Society of Endocrinology and the European Reference Network on rare endocrine conditions (Endo-ERN) ( 4 ). In addition, emergency injection ‘kits
A J Clark
A J Clark
Endocrine Connections Editor-in-Chief, Emeritus Professor of Endocrinology, University of London, London, United Kingdom of Great Britain and Northern Ireland
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board expertise in this area. As an example of our aspirations in this area throughout the last year, we have been publishing the output from the European Reference Network on Endocrine Rare Diseases ( https://ec.bioscientifica.com/page/Endo-ERN%20
Felix Reschke
Felix Reschke
Auf Der Bult Children’s Hospital, Centre for Paediatric Endocrinology, Diabetology, and Clinical Research, Hannover, Germany
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Torben Biester
Torben Biester
Auf Der Bult Children’s Hospital, Centre for Paediatric Endocrinology, Diabetology, and Clinical Research, Hannover, Germany
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Thekla von dem Berge
Thekla von dem Berge
Auf Der Bult Children’s Hospital, Centre for Paediatric Endocrinology, Diabetology, and Clinical Research, Hannover, Germany
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Dagmar Jamiolkowski
Dagmar Jamiolkowski
Auf Der Bult Children’s Hospital, Department of Paediatric Dermatology, Hannover, Germany
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Laura Hasse
Laura Hasse
Auf Der Bult Children’s Hospital, Department of Paediatric Dermatology, Hannover, Germany
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Francesca Dassie
Francesca Dassie
Padua University Hospital, Clinica Medica 3, Department of Medicine (DIMED), Padova, Veneto, Italy
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Pietro Maffei
Pietro Maffei
Padua University Hospital, Clinica Medica 3, Department of Medicine (DIMED), Padova, Veneto, Italy
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Katharina Klee
Katharina Klee
Auf Der Bult Children’s Hospital, Centre for Paediatric Endocrinology, Diabetology, and Clinical Research, Hannover, Germany
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Olga Kordonouri
Olga Kordonouri
Auf Der Bult Children’s Hospital, Centre for Paediatric Endocrinology, Diabetology, and Clinical Research, Hannover, Germany
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Hagen Ott
Hagen Ott
Auf Der Bult Children’s Hospital, Department of Paediatric Dermatology, Hannover, Germany
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Thomas Danne
Thomas Danne
Auf Der Bult Children’s Hospital, Centre for Paediatric Endocrinology, Diabetology, and Clinical Research, Hannover, Germany
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be motivating for more intense research efforts and further strengthen social solidarity as it is driven by ENDO-ERN, the European Reference Network on Rare Endocrine Conditions, for example. European reference networks are virtual networks of experts
Danielle Christine Maria van der Kaay
Danielle Christine Maria van der Kaay
Erasmus University Medical Center, Department of Pediatrics, Subdivision of Endocrinology, Rotterdam, Netherlands
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Anne Rochtus
Anne Rochtus
Department of Pediatric Endocrinology, University Hospitals Leuven, Leuven, Belgium
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Gerhard Binder
Gerhard Binder
University Children’s Hospital, Pediatric Endocrinology, University of Tübingen, Tübingen, Germany
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Ingo Kurth
Ingo Kurth
Institute of Human Genetics, Medical Faculty, RWTH Aachen University, Aachen, Germany
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Dirk Prawitt
Dirk Prawitt
Center for Paediatrics and Adolescent Medicine, University Medical Center, Mainz, Germany
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Irène Netchine
Irène Netchine
Sorbonne Université, Centre de Recherche Saint-Antoine, INSERM, Assistance Publique-Hôpitaux de Paris (AP-HP), Paris, France
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Gudmundur Johannsson
Gudmundur Johannsson
Department of Internal Medicine and Clinical Nutrition, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
Department of Endocrinology at Sahlgrenska University Hospital, Gothenburg, Sweden
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Department of Endocrinology at Sahlgrenska University Hospital, Gothenburg, Sweden
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Anita C S Hokken-Koelega
Anita C S Hokken-Koelega
Erasmus University Medical Center, Department of Pediatrics, Subdivision of Endocrinology, Rotterdam, Netherlands
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Miriam Elbracht
Miriam Elbracht
Institute of Human Genetics, Medical Faculty, RWTH Aachen University, Aachen, Germany
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Thomas Eggermann
Thomas Eggermann
Institute of Human Genetics, Medical Faculty, RWTH Aachen University, Aachen, Germany
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tests in the beginning of a testing cascade might also help to identify the genetic cause of specific growth disorders. Existing and future networks like the ENDO-ERN will further improve the consenting on testing strategies as well as their
Mette H Viuff
Mette H Viuff
Department of Molecular Medicine, Aarhus University Hospital, Aarhus, Denmark
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Claus H Gravholt
Claus H Gravholt
Department of Molecular Medicine, Aarhus University Hospital, Aarhus, Denmark
Department of Endocrinology, Aarhus University Hospital, Aarhus, Denmark
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Department of Endocrinology, Aarhus University Hospital, Aarhus, Denmark
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(ENDO-ERN) within the EU, should prove to be a leveraging mechanism for ensuring equal level and accessibility of care, as well as quality of life, fertility, optimal care etc., promote cross-border research within the EU (and eventually also outside of
Clemens Kamrath
Clemens Kamrath
Center of Child and Adolescent Medicine, Justus Liebig University, Giessen, Germany
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Alexander Eckert
Alexander Eckert
German Center for Diabetes Research (DZD), Munich-Neuherberg, Germany
Institute of Epidemiology and Medical Biometry, ZIBMT, Ulm University, Ulm, Germany
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Institute of Epidemiology and Medical Biometry, ZIBMT, Ulm University, Ulm, Germany
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Birgit Rami-Merhar
Birgit Rami-Merhar
Department of Pediatrics and Adolescent Medicine, Medical University Vienna, Vienna, Austria
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Sebastian Kummer
Sebastian Kummer
Department of General Pediatrics, Neonatology and Pediatric Cardiology, Heinrich Heine University, Medical Faculty, Duesseldorf, Germany
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Martin Wabitsch
Martin Wabitsch
Center for Rare Endocrine Diseases, Division of Pediatric Endocrinology and Diabetes, Department of Pediatrics and Adolescent Medicine, Ulm University Medical Centre, Ulm, Germany
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Katharina Laubner
Katharina Laubner
Division of Endocrinology and Diabetology, Department of Medicine II, Medical Center – University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg im Breisgau, Germany
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Florian Kopp
Florian Kopp
Forth Clinical Department of Medicine, Academic Teaching Hospital Augsburg, Augsburg, Germany
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Silvia Müther
Silvia Müther
Center for Pediatric Diabetology, DRK-Kliniken-Berlin Westend, Berlin, Germany
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Steffen Mühldorfer
Steffen Mühldorfer
Department for Gastroenterology, Endocrinology and Metabolic Diseases, Bayreuth University Hospital, Friedrich-Alexander University Erlangen-Nuremberg, Bayreuth, Germany
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Reinhard W Holl
Reinhard W Holl
German Center for Diabetes Research (DZD), Munich-Neuherberg, Germany
Institute of Epidemiology and Medical Biometry, ZIBMT, Ulm University, Ulm, Germany
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Institute of Epidemiology and Medical Biometry, ZIBMT, Ulm University, Ulm, Germany
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subsequent cardiovascular and non-cardiovascular sequelae. Therefore, patients with SIRS should be managed by or in collaboration with specialized centers, e.g. using the framework of the European Reference Network on Rare Endocrine Conditions (Endo-ERN) for
