Steering Committee

Main Thematic Groups (MTG)

MTGExpertiseNameCountryOrganisation
1 AdrenalPaediatricSvetlana LajicSwedenKarolinska University Hospital
1 AdrenalAdultNicole ReischGermanyLudwig-Maximilian-University Munich
1 AdrenalePAGManuela BrösamleGermanyAGS-Eltern- und Patienteninitiative e.V.
1 AdrenalePAGGiorgio Dal MasoItalyArfSAG (Associazione Refionale Famiglie Sindrome Adreno Genitale)
1 AdrenalePAGJette KristensenDenmarkAddison Foreningen Danmark
1 AdrenalePAGAlessandro LazzeriniSpainSpanish Association of Congenital Adrenal Hyperplasia (CAH)
1 AdrenalePAGZuzana SmithSlovakiaZdruženie Addisonikov Slovenska
2 Disorders of Calcium & Phosphate HomeostasisPaediatricAgnes LinglartFranceHôpital Bicêtre
2 Disorders of Calcium & Phosphate HomeostasisAdultLars RejnmarkDenmarkAarhus University Hospital
2 Disorders of Calcium & Phosphate HomeostasisePAGMartha KirchhoffGermanyPhosphatdiabetes e.V.
3 Genetic Disorders of Glucose & Insulin HomeostasisAdult and PaediatricPietro MaffeiItalyAzienda Ospedaliera di Padova (AOP)
3 Genetic Disorders of Glucose & Insulin HomeostasisPaediatricFelix ReschkeGermanyHannoversche Kinderheilanstalt, Diabetes Centre for Children and Adolescents
3 Genetic Disorders of Glucose & Insulin HomeostasisePAGValeria CorradinItalyAILIP (Ass.ne Italiana Lipodistrofia)
3 Genetic Disorders of Glucose & Insulin HomeostasisePAGNolwen LeFlochFranceAssociation du syndrome de Wolfram (ASW)
3 Genetic Disorders of Glucose & Insulin HomeostasisePAGBernd RosenbichlerGermanyAlström Syndrom e.V.
4 Genetic Endocrine Tumour SyndromesAdultFrederic CastinettiFranceAssistance Publique – Hôpitaux de Marseille
4 Genetic Endocrine Tumour SyndromesPaediatricAntje RedlichGermanyUniversity Children’s Hospital Magdeburg
4 Genetic Endocrine Tumour SyndromesePAGPetra BruegmannGermanyGerman Network of Pituitary and Adrenal Diseases
5 Growth & Genetic Obesity SyndromesAdultCharlotte HöybyeSwedenKarolinska University Hospital
5 Growth & Genetic Obesity SyndromesPaediatricSusan O’ConnellIrelandBeaumont Hospital
5 Growth & Genetic Obesity SyndromesePAGPatricia CarlGermanyBKMF e.V. (Federal Association for People of Short Stature and their Families)
5 Growth & Genetic Obesity SyndromesePAGNathalie FerardFranceAssociation Grandir
5 Growth & Genetic Obesity SyndromesePAGBerit OtterleiNorwayLandsforeningen for Prader-Willis Syndrom
6 Hypothalamic and Pituitary ConditionsAdultNienke BiermaszNetherlandsLeiden University Medical Center
6 Hypothalamic and Pituitary ConditionsPaediatricEvangelia CharmandariGreeceAghia Sophia Children’s Hospital
6 Hypothalamic and Pituitary ConditionsePAGJohan de GraafNetherlandsDutch Pituitary Foundation
6 Hypothalamic and Pituitary ConditionsePAGDiana VitaliItalySOD ITALIA – Italian organization for septo optic dysplasia and other neuroendocrine disorders
7 Sex Development & MaturationPaediatricHedi ClaahsenNetherlandsRadboud University Nijmegen Medical Center – including Amalia’s children Hospital
7 Sex Development & MaturationAdultLuca PersaniItalyIstituto Auxologico Italiano – Istituto di Ricovero e Cura a Carattere Scientifico
7 Sex Development & MaturationePAGChris BreenUnited KingdomKlinefelter’s Syndrome Association
7 Sex Development & MaturationePAGManuela BrösamleGermanyAGS-Eltern- und Patienteninitiative e.V.
7 Sex Development & MaturationePAGArlene SmythUnited KingdomTurner Syndrome Support Society
8 ThyroidPaediatricAthanasia StoupaFranceAssistance Publique – Consortium Cochin, Robert Debré, Necker, St Antoine, La Pitié Salpétrière, Trousseau University Hospitals
8 ThyroidAdultEdward VisserNetherlandsErasmus MC: University Medical Center Rotterdam
8 ThyroidePAGBeate BartèsFranceVivre sans Thyroide

Work Packages (WP)

WPExpertiseNameCountryOrganisation
1 Management & CoordinationPaediatricOlaf HiortGermanyUniversitätsklinikum Schleswig-Holstein
1 Management & CoordinationAdultAlberto PereiraNetherlandsAmsterdam UMC
2 DisseminationAdultAlberto PereiraNetherlandsAmsterdam UMC
2 DisseminationePAGBeate BartèsFranceVivre sans Thyroide
2 DisseminationePAGZuzana SmithSlovakiaZdruženie Addisonikov Slovenska
3 EvaluationAdultAlberto PereiraNetherlandsAmsterdam UMC
3 EvaluationePAGJohan de GraafNetherlandsDutch Pituitary Foundation
4 Healthcare & CPMSPaediatricOlaf HiortGermanyUniversitätsklinikum Schleswig-Holstein
4 Healthcare & CPMSePAGValeria CorradinItalyAILIP (Ass.ne Italiana Lipodistrofia)
4 Healthcare & CPMSePAGAlessandro LazzeriniSpainSpanish Association of Congenital Adrenal Hyperplasia (CAH)
5 Registries, data management and analysisPaediatricFaisal AhmedNetherlandsLeiden University Medical Center
5 Registries, data management and analysisAdultNatasha Appelman-DijkstraNetherlandsLeiden University Medical Center
5 Registries, data management and analysisePAGChris BreenUnited KingdomKlinefelter’s Syndrome Association
5 Registries, data management and analysisePAGGiorgio Dal MasoItalyArfSAG (Associazione Refionale Famiglie Sindrome Adreno Genitale)
5 Registries, data management and analysisePAGJohan de GraafNetherlandsDutch Pituitary Foundation
5 Registries, data management and analysisePAGMartha KirchhoffGermanyPhosphatdiabetes e.V.
5 Registries, data management and analysisePAGArlene SmythUnited KingdomTurner Syndrome Support Society
6 Education and TrainingPaediatricVioleta IotovaBulgariaUMHAT “Sveta Marina” (Varna)
6 Education and TrainingePAGManuela BrösamleGermanyAGS-Eltern- und Patienteninitiative e.V.
6 Education and TrainingePAGPetra BruegmannGermanyGerman Network of Pituitary and Adrenal Diseases
7 Clinical Practice Guidelines and Clinical Decision Support ToolsAdultOlaf DekkersNetherlandsLeiden University Medical Center
7 Clinical Practice Guidelines and Clinical Decision Support ToolsPaediatricAnna NordenströmSwedenKarolinska University Hospital
7 Clinical Practice Guidelines and Clinical Decision Support ToolsePAGJette KristensenDenmarkAddison Foreningen Danmark
7 Clinical Practice Guidelines and Clinical Decision Support ToolsePAGAlessandro LazzeriniSpainSpanish Association of Congenital Adrenal Hyperplasia (CAH)
7 Clinical Practice Guidelines and Clinical Decision Support ToolsePAGDiana VitaliItalySOD ITALIA – Italian organization for septo optic dysplasia and other neuroendocrine disorders

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