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

Agnes Trautmann  Speaker Heidelberg, Germany,
University Hospital 
» Ped. center
Beata Lipska-Zietkiewicz  Co-Chair Gdansk, Poland,
University Clinical Centre Gdansk 
» Adult center
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
Nathalie Demoulin  Brussels, Belgium,
Cliniques universitaires Saint-Luc - UCL 
» Adult center
Olivier Devuyst  Brussels, Belgium,
Cliniques universitaires Saint-Luc - UCL 
» Adult center
Valentine Gillion  Brussels, Belgium,
Cliniques universitaires Saint-Luc - UCL 
» Adult center
Nathalie Godefroid  Brussels, Belgium,
Cliniques universitaires Saint-Luc - UCL 
» Adult center
Johann Morelle  Brussels, Belgium,
Cliniques universitaires Saint-Luc - UCL 
» Adult center
  Thomas Benzing  Cologne, Germany,
University Hospital 
» Adult center
Kathrin Burgmaier  Cologne, Germany,
University Hospital 
» Ped. center
  Volker Burst  Cologne, Germany,
University Hospital 
» Adult center
  Christine Kurschat  Cologne, Germany,
University Hospital 
» Adult center
Max Liebau  Cologne, Germany,
University Hospital 
» Ped. center
  Roman-Ulrich Mueller  Cologne, Germany,
University Hospital 
» Adult center
Lutz Weber  Cologne, Germany,
University Hospital 
» Ped. center
Anja Büscher  Essen, Germany,
University Children`s Hospital 
» Ped. center
Rainer Büscher  Essen, Germany,
University Children`s Hospital 
» Ped. center
Lars Pape  Essen, Germany,
University Children`s Hospital 
» Ped. center
Francesca Becherucci  Florence, Italy,
Meyer Children’s Hospital 
» Ped. center
Paola Romagnani  Florence, Italy,
Meyer Children’s Hospital 
» Ped. center
Augusto Vaglio  Florence, Italy,
Meyer Children’s Hospital 
» Ped. center
  Irena Balasz Chmielewska  Gdansk, Poland,
University Clinical Centre Gdansk 
» Ped. center
Aleksandra Zurowska  Gdansk, Poland,
University Clinical Centre Gdansk 
» Ped. center
Gianluca Caridi  Genova, Italy,
Istituto Giannina Gaslini 
» Ped. center
Gian Marco Ghiggeri  Genova, Italy,
Istituto Giannina Gaslini 
» Ped. center
Francesca Lugani  Genova, Italy,
Istituto Giannina Gaslini 
» Ped. center
Florian Grahammer  Hamburg, Germany,
University Medical Center Hamburg-Eppendorf 
» Adult center
  Thomas Henne  Hamburg, Germany,
University Medical Center Hamburg-Eppendorf 
» Ped. center
Tobias B. Huber  Hamburg, Germany,
University Medical Center Hamburg-Eppendorf 
» Adult center
Christian Krebs  Hamburg, Germany,
University Medical Center Hamburg-Eppendorf 
» Adult center
  Sebastian Loos  Hamburg, Germany,
University Medical Center Hamburg-Eppendorf 
» Ped. center
Anne Mühlig  Hamburg, Germany,
University Medical Center Hamburg-Eppendorf 
» Ped. center
Jun Oh  Hamburg, Germany,
University Medical Center Hamburg-Eppendorf 
» Ped. center
  Jan-Hendrik Riedel  Hamburg, Germany,
University Medical Center Hamburg-Eppendorf 
» Adult center
Raphael Schild  Hamburg, Germany,
University Medical Center Hamburg-Eppendorf 
» Ped. center
Jan-Eric Turner  Hamburg, Germany,
University Medical Center Hamburg-Eppendorf 
» Adult center
  Thurid Ahlenstiel  Hannover, Germany,
Hannover Medical School 
» Ped. center
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
Franz Schaefer  Heidelberg, Germany,
University Hospital 
» Ped. center
Burkhard Toenshoff  Heidelberg, Germany,
University Hospital 
» Ped. center
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
Kathleen Claes  Leuven, Belgium,
University Hospitals Leuven 
» Adult center
Noel Knops  Leuven, Belgium,
University Hospitals Leuven 
» Ped. center
Elena Levtchenko  Leuven, Belgium,
University Hospitals Leuven 
» Ped. center
Ben Sprangers  Leuven, Belgium,
University Hospitals Leuven 
» Adult center
Martin Konrad  Münster, Germany,
University Hospital 
» Ped. center
Giovanni Montini  Milano, Italy,
IRCCS Ca' Granda Ospedale Maggiore Policlinico 
» Ped. center
Ilaria Luongo  Naples, Italy,
A.O. Santobono-Pausilipon 
» Ped. center
Gabriele Malgieri  Naples, Italy,
A.O. Santobono-Pausilipon 
» Ped. center
  Francesca Nuzzi  Naples, Italy,
A.O. Santobono-Pausilipon 
» Ped. center
Carmine Pecoraro  Naples, Italy,
A.O. Santobono-Pausilipon 
» Ped. center
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
Rutger Maas  Nijmegen, Netherlands,
Radboud UMC 
» Adult center
Michiel Schreuder  Nijmegen, Netherlands,
Radboud UMC 
» Ped. center
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
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
Olivia Gillion-Boyer  Paris, France,
Necker-Enfants Malades University Hospital 
» Ped. center
Laurence Heidet  Paris, France,
Necker-Enfants Malades University Hospital 
» Ped. center
Bertrand Knebelmann  Paris, France,
Necker-Enfants Malades University Hospital 
» Adult center
Aude Servais  Paris, France,
Necker-Enfants Malades University Hospital 
» Adult center
  Emmanuelle Plaisier  Paris, France,
Tenon Hospital, Assistance Publique Hôpitaux de Paris 
» Adult center
Martin Bezdicka  Prague, Czech Republic,
University Hospital Motol 
» Ped. center
Nadezda Simankova  Prague, Czech Republic,
University Hospital Motol 
» Ped. center
Dana Thomasova  Prague, Czech Republic,
University Hospital Motol 
» Ped. center
Jakub Zieg  Prague, Czech Republic,
University Hospital Motol 
» Ped. center
Rocco Baccaro  Rome, Italy,
Gemelli Hospital 
» Adult center
Giuseppe Grandaliano  Rome, Italy,
Gemelli Hospital 
» Adult center
Francesco Emma  Rome, Italy,
Rome, Bambino Gesù Children's Hospital 
» Ped. center
Laura Massella  Rome, Italy,
Rome, Bambino Gesù Children's Hospital 
» Ped. center
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
Anna Maria Pinto  Siena, Italy,
University Hospital 
» Adult center
  Alessandra Renieri  Siena, Italy,
University Hospital 
» Adult center
Peter Barany  Stockholm, Sweden,
Karolinska University Hospital 
» Adult center
  Peter Hemmingsson  Stockholm, Sweden,
Karolinska University Hospital 
» Adult center
Maria Herthelius  Stockholm, Sweden,
Karolinska University Hospital 
» Ped. center
Bogna Niwinska-Faryna  Stockholm, Sweden,
Karolinska University Hospital 
» Ped. center
Emanuele de Simone  Torino, Italy,
San Giovanni Bosco Hospital and University of Torino 
» Adult center
Roberta Fenoglio  Torino, Italy,
San Giovanni Bosco Hospital and University of Torino 
» Adult center
Dario Roccatello  Torino, Italy,
San Giovanni Bosco Hospital and University of Torino 
» Adult center
Savino Sciascia  Torino, Italy,
San Giovanni Bosco Hospital and University of Torino 
» Adult center
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
Stephanie Tellier  Toulouse, France,
Toulouse, University Hospital 
» Ped. center
Albertien vanEerde  Utrecht, Netherlands,
University Medical Centre 
» Ped. center
Rimante Cerkauskiene  Vilnius, Lithuania,
Vilnius University Hospital Santaros Klinikos 
» Ped. center
Augustina Jankauskiene  Vilnius, Lithuania,
Vilnius University Hospital Santaros Klinikos 
» Ped. center
  Kalman Tory  Affiliated partner Budapest, Hungary,
Semmelweis University 
» Ped. center
Jan Ulrich Becker  External Institute of Pathology, University of Cologne 
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 
Daniel Renault  Patient representative http://federg.org/ (Alport) 

European Reference Networks
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