The workgroup for hereditary glomerulopathies covers the inherited, steroid-resistant forms of nephrotic syndrome (the "podocytopathies"), Alport and thin basement membrane syndrome (the "collagenopathies"), and rare metabolic disorders affecting the glomerulus (such as in Fabry disease).
Pediatric and adult nephrologists closely collaborate in the workgroup to provide the full expertise required to diagnose and treat these life-long disorders, which can manifest at highly variable age. The group works with expert geneticists from the Molecular Diagnostics Taskforce to ensure state-of-the-art diagnostics and family counseling. The workgroup aims to develop guidelines and pathways wherever needed for efficient management of these challenging disorders.
Besides harmonizing clinical management, the workgroup members are dedicated to develop an active research agenda to identify new disease causing genes, investigate genetic and biochemical markers predicting the likely course of the diseases, and embark in clinical trials exploring new therapies to stabilize or improve kidney function and slow down the progression to end-stage kidney disease.
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Beata Lipska-Zietkiewicz | Speaker |
Gdansk, Poland, University Clinical Centre Gdansk |
» Ped. center |
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Roser Torra | Co-Chair |
Barcelona, Spain, Hospital de la Santa Creu I Sant Pau and Fundacio Puigvert/IUNA |
» Adult center |
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Kalman Tory | Co-Chair |
Budapest, Hungary, Semmelweis University |
» Ped. center |
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Antonia Bouts |
Amsterdam, Netherlands, Amsterdam, Academic Medical Center (AMC) |
» Ped. center | |
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Elena Levtchenko |
Amsterdam, Netherlands, Amsterdam, Academic Medical Center (AMC) |
» Ped. center | |
Michiel Oosterveld |
Amsterdam, Netherlands, Amsterdam, Academic Medical Center (AMC) |
» Ped. center | ||
Ans van Wijk |
Amsterdam, Netherlands, Amsterdam, Academic Medical Center (AMC) |
» Ped. center | ||
Ioannis Boletis |
Athens, Greece, Laiko General Hospital of Athens |
» Adult center | ||
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Miquel Blasco |
Barcelona, Spain, Hospital Clinic de Barcelona |
» Adult center | |
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Luis Quintana |
Barcelona, Spain, Hospital Clinic de Barcelona |
» Adult center | |
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Montserrat Díaz Encarnación |
Barcelona, Spain, Hospital de la Santa Creu I Sant Pau and Fundacio Puigvert/IUNA |
» Adult center | |
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Monica Furlano |
Barcelona, Spain, Hospital de la Santa Creu I Sant Pau and Fundacio Puigvert/IUNA |
» Adult center | |
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Helena Marco |
Barcelona, Spain, Hospital de la Santa Creu I Sant Pau and Fundacio Puigvert/IUNA |
» Adult center | |
Alvaro Madrid |
Barcelona, Spain, Hospital San Joan de Deu |
» Ped. center | ||
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Loreto Gesualdo |
Bari, Italy, AOU Consorziale policlinico di Bari-Ospedale Pediatrico Giovanni XXIII |
» Adult center | |
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Marica Giliberti |
Bari, Italy, AOU Consorziale policlinico di Bari-Ospedale Pediatrico Giovanni XXIII |
» Adult center | |
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Francesco Pesce |
Bari, Italy, AOU Consorziale policlinico di Bari-Ospedale Pediatrico Giovanni XXIII |
» Adult center | |
Kai-Uwe Eckardt |
Berlin, Germany, Charité - Universitätsmedizin Berlin |
» Adult center | ||
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Jan Halbritter |
Berlin, Germany, Charité - Universitätsmedizin Berlin |
» Adult center | |
Dominik Müller |
Berlin, Germany, Charité - Universitätsmedizin Berlin |
» Ped. center | ||
Markus Schueler |
Berlin, Germany, Charité - Universitätsmedizin Berlin |
» Adult center | ||
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Irene Capelli |
Bologna, Italy, AOU Policlinico S. Orsola Bologna |
» Adult center | |
Marisa Santostefano |
Bologna, Italy, AOU Policlinico S. Orsola Bologna |
» Adult center | ||
Lionel Couzi |
Bordeaux, France, University Hospital |
» Adult center | ||
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Astrid Gordon-Dubrasquet |
Bordeaux, France, University Hospital |
» Ped. center | |
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Brigitte Llanas |
Bordeaux, France, University Hospital |
» Ped. center | |
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Claire Rigothier |
Bordeaux, France, University Hospital |
» Adult center | |
Karin Dahan |
Brussels, Belgium, Cliniques universitaires Saint-Luc - UCL |
» Adult center | ||
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Nathalie Demoulin |
Brussels, Belgium, Cliniques universitaires Saint-Luc - UCL |
» Adult center | |
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Olivier Devuyst |
Brussels, Belgium, Cliniques universitaires Saint-Luc - UCL |
» Adult center | |
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Valentine Gillion |
Brussels, Belgium, Cliniques universitaires Saint-Luc - UCL |
» Adult center | |
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Nathalie Godefroid |
Brussels, Belgium, Cliniques universitaires Saint-Luc - UCL |
» Adult center | |
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Johann Morelle |
Brussels, Belgium, Cliniques universitaires Saint-Luc - UCL |
» Adult center | |
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George Claudiu Costea |
Bucharest, Romania, Fundeni Clinical Institute |
» Ped. center | |
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Adrian Catalin Lungu |
Bucharest, Romania, Fundeni Clinical Institute |
» Ped. center | |
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Nóra Ledó |
Budapest, Hungary, Semmelweis University |
» Adult center | |
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Ákos Pethő |
Budapest, Hungary, Semmelweis University |
» Adult center | |
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George Reusz |
Budapest, Hungary, Semmelweis University |
» Ped. center | |
Péter Sallay |
Budapest, Hungary, Semmelweis University |
» Ped. center | ||
Péter Studinger |
Budapest, Hungary, Semmelweis University |
» Adult center | ||
Attila Szabó |
Budapest, Hungary, Semmelweis University |
» Ped. center | ||
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András Tislér |
Budapest, Hungary, Semmelweis University |
» Adult center | |
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Jan Ulrich Becker |
Cologne, Germany, University Hospital |
» Ped. center | |
Thomas Benzing |
Cologne, Germany, University Hospital |
» Adult center | ||
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Kathrin Burgmaier |
Cologne, Germany, University Hospital |
» Ped. center | |
Volker Burst |
Cologne, Germany, University Hospital |
» Adult center | ||
Christine Kurschat |
Cologne, Germany, University Hospital |
» Adult center | ||
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Max Liebau |
Cologne, Germany, University Hospital |
» Ped. center | |
Roman-Ulrich Mueller |
Cologne, Germany, University Hospital |
» Adult center | ||
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Lutz Weber |
Cologne, Germany, University Hospital |
» Ped. center | |
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Dorota Drozdz |
Cracow, Poland, University Children's Hospital of Cracow |
» Ped. center | |
Joanna Kwinta-Rybicka |
Cracow, Poland, University Children's Hospital of Cracow |
» Ped. center | ||
Monika Miklaszewska |
Cracow, Poland, University Children's Hospital of Cracow |
» Ped. center | ||
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Anna Moczulska |
Cracow, Poland, University Children's Hospital of Cracow |
» Ped. center | |
Iwona Ogarek |
Cracow, Poland, University Children's Hospital of Cracow |
» Ped. center | ||
Elżbieta Szczęsny-Choruz |
Cracow, Poland, University Children's Hospital of Cracow |
» Ped. center | ||
Katarzyna Wilkosz |
Cracow, Poland, University Children's Hospital of Cracow |
» Ped. center | ||
Katarzyna Zachwieja |
Cracow, Poland, University Children's Hospital of Cracow |
» Ped. center | ||
Peter J Conlon |
Dublin, Ireland, Beaumont Hospital |
» Adult center | ||
Declan DeFreitas |
Dublin, Ireland, Beaumont Hospital |
» Adult center | ||
Colm Magee |
Dublin, Ireland, Beaumont Hospital |
» Adult center | ||
Atif Awan |
Dublin, Ireland, Children`s Health Ireland (CHI) at Temple Street |
» Ped. center | ||
Janina Müller-Delle |
Erlangen, Germany, University Hospital |
» Adult center | ||
Michael Wiesener |
Erlangen, Germany, University Hospital |
» Adult center | ||
Thurid Ahlenstiel-Grunow |
Essen, Germany, University Children`s Hospital |
» Ped. center | ||
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Anja Büscher |
Essen, Germany, University Children`s Hospital |
» Ped. center | |
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Rainer Büscher |
Essen, Germany, University Children`s Hospital |
» Ped. center | |
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Lars Pape |
Essen, Germany, University Children`s Hospital |
» Ped. center | |
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Francesca Becherucci |
Florence, Italy, Meyer Children’s Hospital IRCCS |
» Ped. center | |
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Paola Romagnani |
Florence, Italy, Meyer Children’s Hospital IRCCS |
» Ped. center | |
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Augusto Vaglio |
Florence, Italy, Meyer Children’s Hospital IRCCS |
» Ped. center | |
Irena Bałasz-Chmielewska |
Gdansk, Poland, University Clinical Centre Gdansk |
» Ped. center | ||
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Aleksandra Zurowska |
Gdansk, Poland, University Clinical Centre Gdansk |
» Ped. center | |
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Gianluca Caridi |
Genoa, Italy, Istituto Giannina Gaslini |
» Ped. center | |
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Gian Marco Ghiggeri |
Genoa, Italy, Istituto Giannina Gaslini |
» Ped. center | |
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Francesca Lugani |
Genoa, Italy, Istituto Giannina Gaslini |
» Ped. center | |
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Joke Dehoorne |
Ghent, Belgium, UZ Ghent |
» Ped. center | |
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Lien Dossche |
Ghent, Belgium, UZ Ghent |
» Ped. center | |
Agnieszka Prytula |
Ghent, Belgium, UZ Ghent |
» Ped. center | ||
Ann Raes |
Ghent, Belgium, UZ Ghent |
» Ped. center | ||
Steven Van Laecke |
Ghent, Belgium, UZ Ghent |
» Adult center | ||
Wim vanBiesen |
Ghent, Belgium, UZ Ghent |
» Adult center | ||
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Johan Vande Walle |
Ghent, Belgium, UZ Ghent |
» Ped. center | |
Jill Vanmassenhove |
Ghent, Belgium, UZ Ghent |
» Adult center | ||
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Stefan Berger |
Groningen, Netherlands, University Medical Center |
» Adult center | |
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Charlotte Bootsma-Robroeks |
Groningen, Netherlands, University Medical Center |
» Ped. center | |
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Mark Eijgelsheim |
Groningen, Netherlands, University Medical Center |
» Adult center | |
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Casper Franssen |
Groningen, Netherlands, University Medical Center |
» Adult center | |
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Ron Gansevoort |
Groningen, Netherlands, University Medical Center |
» Adult center | |
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Valentina Gracchi |
Groningen, Netherlands, University Medical Center |
» Ped. center | |
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Esther Meijer |
Groningen, Netherlands, University Medical Center |
» Adult center | |
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Jan-Stephan Sanders |
Groningen, Netherlands, University Medical Center |
» Adult center | |
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Coen Stegeman |
Groningen, Netherlands, University Medical Center |
» Adult center | |
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Florian Grahammer |
Hamburg, Germany, University Medical Center Hamburg-Eppendorf |
» Adult center | |
Thomas Henne |
Hamburg, Germany, University Medical Center Hamburg-Eppendorf |
» Ped. center | ||
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Tobias B. Huber |
Hamburg, Germany, University Medical Center Hamburg-Eppendorf |
» Adult center | |
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Christian Krebs |
Hamburg, Germany, University Medical Center Hamburg-Eppendorf |
» Adult center | |
Sebastian Loos |
Hamburg, Germany, University Medical Center Hamburg-Eppendorf |
» Ped. center | ||
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Anne Mühlig |
Hamburg, Germany, University Medical Center Hamburg-Eppendorf |
» Ped. center | |
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Jun Oh |
Hamburg, Germany, University Medical Center Hamburg-Eppendorf |
» Ped. center | |
Jan-Hendrik Riedel |
Hamburg, Germany, University Medical Center Hamburg-Eppendorf |
» Adult center | ||
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Raphael Schild |
Hamburg, Germany, University Medical Center Hamburg-Eppendorf |
» Ped. center | |
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Jan-Eric Turner |
Hamburg, Germany, University Medical Center Hamburg-Eppendorf |
» Adult center | |
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Dieter Haffner |
Hannover, Germany, Hannover Medical School |
» Ped. center | |
Mario Schiffer |
Hannover, Germany, Hannover Medical School |
» Adult center | ||
Kai Schmidt-Ott |
Hannover, Germany, Hannover Medical School |
» Adult center | ||
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Vera Cornelius |
Heidelberg, Germany, University Hospital |
» Ped. center | |
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Stefanie Haeberle |
Heidelberg, Germany, University Hospital |
» Ped. center | |
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Clémence Le Cornec |
Heidelberg, Germany, University Hospital |
» Ped. center | |
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Franz Schaefer |
Heidelberg, Germany, University Hospital |
» Ped. center | |
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Burkhard Toenshoff |
Heidelberg, Germany, University Hospital |
» Ped. center | |
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Agnes Trautmann |
Heidelberg, Germany, University Hospital |
» Ped. center | |
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Tanja Wlodkowski |
Heidelberg, Germany, University Hospital |
» Ped. center | |
Tuula Hölttä |
Helsinki, Finland, Children´s Hospital, Helsinki University Hospital |
» Ped. center | ||
Timo Jahnukainen |
Helsinki, Finland, Children´s Hospital, Helsinki University Hospital |
» Ped. center | ||
Juuso Tainio |
Helsinki, Finland, Children´s Hospital, Helsinki University Hospital |
» Ped. center | ||
User Test |
Leipzig, Germany, University Hospital |
» Adult center | ||
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Kathleen Claes |
Leuven, Belgium, University Hospitals Leuven |
» Adult center | |
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Noel Knops |
Leuven, Belgium, University Hospitals Leuven |
» Ped. center | |
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Ben Sprangers |
Leuven, Belgium, University Hospitals Leuven |
» Adult center | |
Tanja Kersnik Levart |
Ljubljana, Slovenia, University Medical Centre |
» Ped. center | ||
Kopač Matjaž |
Ljubljana, Slovenia, University Medical Centre |
» Ped. center | ||
Anamarija Meglic |
Ljubljana, Slovenia, University Medical Centre |
» Ped. center | ||
Gregor Novljan |
Ljubljana, Slovenia, University Medical Centre |
» Ped. center | ||
Rina Rus |
Ljubljana, Slovenia, University Medical Centre |
» Ped. center | ||
Zeljka VecericHaler |
Ljubljana, Slovenia, University Medical Centre |
» Adult center | ||
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Agnieszka Gach |
Lodz, Poland, Instytut |
» Ped. center | |
Monika Pawlak-Bratkowska |
Lodz, Poland, Instytut |
» Ped. center | ||
Małgorzata Stańczyk |
Lodz, Poland, Instytut |
» Ped. center | ||
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Marcin Tkaczyk |
Lodz, Poland, Instytut |
» Ped. center | |
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Krzysztof Zeman |
Lodz, Poland, Instytut |
» Ped. center | |
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Aurelia Bertholet-Thomas |
Lyon, France, Hôpital Femme Mère Enfant & Université de Lyon |
» Ped. center | |
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Anne-Laure Sellier-Leclerc |
Lyon, France, Hôpital Femme Mère Enfant & Université de Lyon |
» Ped. center | |
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Giovanni Montini |
Milan, Italy, IRCCS Ca' Granda Ospedale Maggiore Policlinico |
» Ped. center | |
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Martin Konrad |
Münster, Germany, University Hospital |
» Ped. center | |
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Ilaria Luongo |
Naples, Italy, A.O. Santobono-Pausilipon |
» Ped. center | |
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Gabriele Malgieri |
Naples, Italy, A.O. Santobono-Pausilipon |
» Ped. center | |
Francesca Nuzzi |
Naples, Italy, A.O. Santobono-Pausilipon |
» Ped. center | ||
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Carmine Pecoraro |
Naples, Italy, A.O. Santobono-Pausilipon |
» Ped. center | |
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Luigi Annicchiarico Petruzzelli |
Naples, Italy, A.O. Santobono-Pausilipon |
» Ped. center | |
Ernie Bongers |
Nijmegen, Netherlands, Radboud UMC |
» Adult center | ||
Jeroen Deegens |
Nijmegen, Netherlands, Radboud UMC |
» Adult center | ||
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Rutger Maas |
Nijmegen, Netherlands, Radboud UMC |
» Adult center | |
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Michiel Schreuder |
Nijmegen, Netherlands, Radboud UMC |
» Ped. center | |
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Jack Wetzels |
Nijmegen, Netherlands, Radboud UMC |
» Adult center | |
Elisa Benetti |
Padua, Italy, Azienda Ospedaliera di Padova |
» Ped. center | ||
Vincent Audard |
Paris, France, APHP Hôpital Henri Mondor, Paris-Est Creteil |
» Adult center | ||
Dil Sahali |
Paris, France, APHP Hôpital Henri Mondor, Paris-Est Creteil |
» Adult center | ||
Véronique Baudouin |
Paris, France, Hospital Robert Debre |
» Ped. center | ||
Corinne Antignac |
Paris, France, Necker-Enfants Malades University Hospital |
» Ped. center | ||
Lauréne Dehoux |
Paris, France, Necker-Enfants Malades University Hospital |
» Ped. center | ||
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Olivia Gillion-Boyer |
Paris, France, Necker-Enfants Malades University Hospital |
» Ped. center | |
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Laurence Heidet |
Paris, France, Necker-Enfants Malades University Hospital |
» Ped. center | |
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Bertrand Knebelmann |
Paris, France, Necker-Enfants Malades University Hospital |
» Adult center | |
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Aude Servais |
Paris, France, Necker-Enfants Malades University Hospital |
» Adult center | |
Emmanuelle Plaisier |
Paris, France, Tenon Hospital, Assistance Publique Hôpitaux de Paris |
» Adult center | ||
Idalina Beirão |
Porto, Portugal, Centro Hospitalar Universitário do Porto |
» Adult center | ||
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Sofia Correia |
Porto, Portugal, Centro Hospitalar Universitário do Porto |
» Adult center | |
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Liane Correia Costa |
Porto, Portugal, Centro Hospitalar Universitário do Porto |
» Ped. center | |
Luisa Lobato |
Porto, Portugal, Centro Hospitalar Universitário do Porto |
» Adult center | ||
Josefina Santos |
Porto, Portugal, Centro Hospitalar Universitário do Porto |
» Adult center | ||
Sofia Santos |
Porto, Portugal, Centro Hospitalar Universitário do Porto |
» Adult center | ||
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Martin Bezdicka |
Prague, Czech Republic, University Hospital Motol |
» Ped. center | |
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Nadezda Simankova |
Prague, Czech Republic, University Hospital Motol |
» Ped. center | |
Dana Thomasova |
Prague, Czech Republic, University Hospital Motol |
» Ped. center | ||
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Jakub Zieg |
Prague, Czech Republic, University Hospital Motol |
» Ped. center | |
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Rocco Baccaro |
Rome, Italy, Gemelli Hospital |
» Adult center | |
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Giuseppe Grandaliano |
Rome, Italy, Gemelli Hospital |
» Adult center | |
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Francesco Emma |
Rome, Italy, Rome, Bambino Gesù Children's Hospital |
» Ped. center | |
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Laura Massella |
Rome, Italy, Rome, Bambino Gesù Children's Hospital |
» Ped. center | |
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Marina Vivarelli |
Rome, Italy, Rome, Bambino Gesù Children's Hospital |
» Ped. center | |
Margherita Baldassarri |
Siena, Italy, University Hospital |
» Adult center | ||
Andrea Guarnieri |
Siena, Italy, University Hospital |
» Adult center | ||
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Anna Maria Pinto |
Siena, Italy, University Hospital |
» Adult center | |
Alessandra Renieri |
Siena, Italy, University Hospital |
» Adult center | ||
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Peter Barany |
Stockholm, Sweden, Karolinska University Hospital |
» Adult center | |
Peter Hemmingsson |
Stockholm, Sweden, Karolinska University Hospital |
» Adult center | ||
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Maria Herthelius |
Stockholm, Sweden, Karolinska University Hospital |
» Ped. center | |
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Bogna Niwinska-Faryna |
Stockholm, Sweden, Karolinska University Hospital |
» Ped. center | |
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Ariane Benezech |
Toulouse, France, Toulouse, University Hospital |
» Ped. center | |
Dominique Chauveau |
Toulouse, France, Toulouse, University Hospital |
» Adult center | ||
Stanislas Faguer |
Toulouse, France, Toulouse, University Hospital |
» Adult center | ||
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Stephanie Tellier |
Toulouse, France, Toulouse, University Hospital |
» Ped. center | |
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Luigi Biancone |
Turin, Italy, AOU Città della Salute e della Scienza di Torino - Molinette Hospital |
» Adult center | |
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Elena Boaglio |
Turin, Italy, AOU Città della Salute e della Scienza di Torino - Molinette Hospital |
» Adult center | |
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Manuel Burdese |
Turin, Italy, AOU Città della Salute e della Scienza di Torino - Molinette Hospital |
» Adult center | |
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Caterina Dolla |
Turin, Italy, AOU Città della Salute e della Scienza di Torino - Molinette Hospital |
» Adult center | |
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Roberta Giraudi |
Turin, Italy, AOU Città della Salute e della Scienza di Torino - Molinette Hospital |
» Adult center | |
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Roberta Camilla |
Turin, Italy, AOU CSS di Torino - Regina Margherita Hospital |
» Ped. center | |
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Bruno Gianoglio |
Turin, Italy, AOU CSS di Torino - Regina Margherita Hospital |
» Ped. center | |
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Francesca Mattozzi |
Turin, Italy, AOU CSS di Torino - Regina Margherita Hospital |
» Ped. center | |
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Licia Peruzzi |
Turin, Italy, AOU CSS di Torino - Regina Margherita Hospital |
» Ped. center | |
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Silvia Pieretti |
Turin, Italy, AOU CSS di Torino - Regina Margherita Hospital |
» Ped. center | |
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Emanuele de Simone |
Turin, Italy, University of Torino-Ospedale HUB Torino Nord |
» Adult center | |
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Roberta Fenoglio |
Turin, Italy, University of Torino-Ospedale HUB Torino Nord |
» Adult center | |
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Dario Roccatello |
Turin, Italy, University of Torino-Ospedale HUB Torino Nord |
» Adult center | |
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Savino Sciascia |
Turin, Italy, University of Torino-Ospedale HUB Torino Nord |
» Adult center | |
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Albertien vanEerde |
Utrecht, Netherlands, University Medical Centre |
» Ped. center | |
Agne Cerkauskaite |
Vilnius, Lithuania, Vilnius University Hospital Santaros Klinikos |
» Adult center | ||
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Rimante Cerkauskiene |
Vilnius, Lithuania, Vilnius University Hospital Santaros Klinikos |
» Ped. center | |
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Augustina Jankauskiene |
Vilnius, Lithuania, Vilnius University Hospital Santaros Klinikos |
» Ped. center | |
Marius Miglinas |
Vilnius, Lithuania, Vilnius University Hospital Santaros Klinikos |
» Adult center | ||
Arturas Vinikovas |
Vilnius, Lithuania, Vilnius University Hospital Santaros Klinikos |
» Adult center | ||
Daniel Gale | External | Royal Free London | ||
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Rachel Lennon | External | Manchester, Manchester University Foundation Trust | |
Sergio Camilo Lopez Garcia | External | London, Great Ormond Street Hospital | ||
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Susana Carvajal Arjona | Patient representative | http://hipofam.org/ (Hypomagnesemia) | |
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Uwe Korst | Patient representative | Bundesverband Niere e.V. (Bundesverband-niere.de) | |
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Johanna Rolfing | Patient representative | Nephie e.V./ Idiopathisches Nephrotisches Syndrom | |
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Evy van Kempen | Patient representative | Nierpatienten Vereniging Nederland https://www.nvn.nl/ | |
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Heidi Zealey | Patient representative | Alport UK |