Workgroup Hereditary Glomerulopathies
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.
WorkGroup Members
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Agnes Trautmann | Speaker |
Heidelberg, Germany, University Hospital |
» Ped. center |
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Beata Lipska-Zietkiewicz | Co-Chair |
Gdansk, Poland, University Clinical Centre Gdansk |
» Adult center |
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Antonia Bouts |
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 | ||
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 | |
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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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 |
» Ped. center | |
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Paola Romagnani |
Florence, Italy, Meyer Children’s Hospital |
» Ped. center | |
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Augusto Vaglio |
Florence, Italy, Meyer Children’s Hospital |
» Ped. center | |
Irena Balasz 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 |
Genova, Italy, Istituto Giannina Gaslini |
» Ped. center | |
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Gian Marco Ghiggeri |
Genova, Italy, Istituto Giannina Gaslini |
» Ped. center | |
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Francesca Lugani |
Genova, Italy, Istituto Giannina Gaslini |
» Ped. 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 | |
Thurid Ahlenstiel |
Hannover, Germany, Hannover Medical School |
» Ped. center | ||
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Dieter Haffner |
Hannover, Germany, Hannover Medical School |
» Ped. center | |
Mario Schiffer |
Hannover, Germany, Hannover Medical School |
» Adult center | ||
Stefanie Haeberle |
Heidelberg, Germany, University Hospital |
» Ped. center | ||
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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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 | ||
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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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Elena Levtchenko |
Leuven, Belgium, University Hospitals Leuven |
» Ped. center | |
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Ben Sprangers |
Leuven, Belgium, University Hospitals Leuven |
» Adult center | |
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Martin Konrad |
Münster, Germany, University Hospital |
» Ped. center | |
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Giovanni Montini |
Milano, Italy, IRCCS Ca' Granda Ospedale Maggiore Policlinico |
» 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 |
Padova, Italy, Azienda Ospedaliera di Padova |
» Ped. center | ||
Germana Longo |
Padova, Italy, Azienda Ospedaliera di Padova |
» Ped. center | ||
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Luisa Murer |
Padova, 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 | ||
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 | ||
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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 | |
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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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Emanuele de Simone |
Torino, Italy, San Giovanni Bosco Hospital and University of Torino |
» Adult center | |
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Roberta Fenoglio |
Torino, Italy, San Giovanni Bosco Hospital and University of Torino |
» Adult center | |
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Dario Roccatello |
Torino, Italy, San Giovanni Bosco Hospital and University of Torino |
» Adult center | |
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Savino Sciascia |
Torino, Italy, San Giovanni Bosco Hospital and University of Torino |
» Adult 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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Albertien vanEerde |
Utrecht, Netherlands, University Medical Centre |
» Ped. 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 | |
Kalman Tory | Affiliated partner |
Budapest, Hungary, Semmelweis University |
» Ped. center | |
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Jan Ulrich Becker | External | Institute of Pathology, University of Cologne | |
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Rachel Lennon | External | Manchester, Manchester University Foundation Trust | |
Sergio Camilo Lopez Garcia | External | London, Great Ormond Street Hospital | ||
Karolina Pawlak | External | Children's HealthIreland (CHI) at Temple Street | ||
Roser Torra | External | Servicio de Nefrología, Fundació Puigvert | ||
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Daniel Renault | Patient representative | http://federg.org/ (Alport) |