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

Beata Lipska-Zietkiewicz  Speaker Gdansk, Poland,
University Clinical Centre Gdansk 
» Ped. center
Roser Torra  Co-Chair Barcelona, Spain,
Hospital de la Santa Creu I Sant Pau and Fundacio Puigvert/IUNA 
» Adult center
Kalman Tory  Co-Chair Budapest, Hungary,
Semmelweis University 
» Ped. 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
  Ioannis Boletis  Athens, Greece,
Laiko General Hospital of Athens 
» Adult center
Miquel Blasco  Barcelona, Spain,
Hospital Clinic de Barcelona 
» Adult center
Luis Quintana  Barcelona, Spain,
Hospital Clinic de Barcelona 
» Adult center
Montserrat Díaz Encarnación  Barcelona, Spain,
Hospital de la Santa Creu I Sant Pau and Fundacio Puigvert/IUNA 
» Adult center
Monica Furlano  Barcelona, Spain,
Hospital de la Santa Creu I Sant Pau and Fundacio Puigvert/IUNA 
» Adult center
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
Loreto Gesualdo  Bari, Italy,
AOU Consorziale policlinico di Bari-Ospedale Pediatrico Giovanni XXIII 
» Adult center
Marica Giliberti  Bari, Italy,
AOU Consorziale policlinico di Bari-Ospedale Pediatrico Giovanni XXIII 
» Adult center
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
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
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
  Astrid Gordon-Dubrasquet  Bordeaux, France,
University Hospital 
» Ped. center
  Brigitte Llanas  Bordeaux, France,
University Hospital 
» Ped. center
  Claire Rigothier  Bordeaux, France,
University Hospital 
» Adult 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
George Claudiu Costea  Bucharest, Romania,
Fundeni Clinical Institute 
» Ped. center
Adrian Catalin Lungu  Bucharest, Romania,
Fundeni Clinical Institute 
» Ped. center
Nóra Ledó  Budapest, Hungary,
Semmelweis University 
» Adult center
Ákos Pethő  Budapest, Hungary,
Semmelweis University 
» Adult center
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
András Tislér  Budapest, Hungary,
Semmelweis University 
» Adult center
Jan Ulrich Becker  Cologne, Germany,
University Hospital 
» Ped. 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
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
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
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 Bałasz-Chmielewska  Gdansk, Poland,
University Clinical Centre Gdansk 
» Ped. center
Aleksandra Zurowska  Gdansk, Poland,
University Clinical Centre Gdansk 
» Ped. center
Gianluca Caridi  Genoa, Italy,
Istituto Giannina Gaslini 
» Ped. center
Gian Marco Ghiggeri  Genoa, Italy,
Istituto Giannina Gaslini 
» Ped. center
Francesca Lugani  Genoa, Italy,
Istituto Giannina Gaslini 
» Ped. center
Joke Dehoorne  Ghent, Belgium,
UZ Ghent 
» Ped. center
Lien Dossche  Ghent, Belgium,
UZ Ghent 
» Ped. center
  Agnieszka Prytula  Ghent, Belgium,
UZ Ghent 
» Ped. center
  Steven Van Laecke  Ghent, Belgium,
UZ Ghent 
» Adult center
  Wim vanBiesen  Ghent, Belgium,
UZ Ghent 
» Adult center
Johan Vande Walle  Ghent, Belgium,
UZ Ghent 
» Ped. center
  Jill Vanmassenhove  Ghent, Belgium,
UZ Ghent 
» Adult center
Stefan Berger  Groningen, Netherlands,
University Medical Center 
» Adult center
  Charlotte Bootsma-Robroeks  Groningen, Netherlands,
University Medical Center 
» Ped. center
Mark Eijgelsheim  Groningen, Netherlands,
University Medical Center 
» Adult center
Casper Franssen  Groningen, Netherlands,
University Medical Center 
» Adult center
Ron Gansevoort  Groningen, Netherlands,
University Medical Center 
» Adult center
  Valentine Gracchi  Groningen, Netherlands,
University Medical Center 
» Ped. center
Esther Meijer  Groningen, Netherlands,
University Medical Center 
» Adult center
Jan-Stephan Sanders  Groningen, Netherlands,
University Medical Center 
» Adult center
Coen Stegeman  Groningen, Netherlands,
University Medical Center 
» Adult 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
Dieter Haffner  Hannover, Germany,
Hannover Medical School 
» Ped. center
  Mario Schiffer  Hannover, Germany,
Hannover Medical School 
» Adult center
Vera Cornelius  Heidelberg, Germany,
University Hospital 
» Ped. 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
Agnes Trautmann  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
  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
Agnieszka Gach  Lodz, Poland,
Instytut "Centrum Zdrowia Matki Polki" (Polish Mother's Memorial Hospital) 
» Ped. center
  Monika Pawlak-Bratkowska  Lodz, Poland,
Instytut "Centrum Zdrowia Matki Polki" (Polish Mother's Memorial Hospital) 
» Ped. center
  Małgorzata Stańczyk  Lodz, Poland,
Instytut "Centrum Zdrowia Matki Polki" (Polish Mother's Memorial Hospital) 
» Ped. center
Marcin Tkaczyk  Lodz, Poland,
Instytut "Centrum Zdrowia Matki Polki" (Polish Mother's Memorial Hospital) 
» Ped. center
Krzysztof Zeman  Lodz, Poland,
Instytut "Centrum Zdrowia Matki Polki" (Polish Mother's Memorial Hospital) 
» Ped. center
Aurelia Bertholet-Thomas  Lyon, France,
Hôpital Femme Mère Enfant & Université de Lyon 
» Ped. center
Anne-Laure Sellier-Leclerc  Lyon, France,
Hôpital Femme Mère Enfant & Université de Lyon 
» Ped. center
Giovanni Montini  Milan, Italy,
IRCCS Ca' Granda Ospedale Maggiore Policlinico 
» Ped. center
Martin Konrad  Münster, Germany,
University Hospital 
» 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  Padua, Italy,
Azienda Ospedaliera di Padova 
» Ped. center
  Germana Longo  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
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
  Idalina Beirão  Porto, Portugal,
Centro Hospitalar Universitário do Porto 
» Adult center
Sofia Correia  Porto, Portugal,
Centro Hospitalar Universitário do Porto 
» Adult center
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
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
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
Luigi Biancone  Turin, Italy,
AOU Città della Salute e della Scienza di Torino - Molinette Hospital 
» Adult center
Elena Boaglio  Turin, Italy,
AOU Città della Salute e della Scienza di Torino - Molinette Hospital 
» Adult center
Manuel Burdese  Turin, Italy,
AOU Città della Salute e della Scienza di Torino - Molinette Hospital 
» Adult center
Caterina Dolla  Turin, Italy,
AOU Città della Salute e della Scienza di Torino - Molinette Hospital 
» Adult center
Roberta Giraudi  Turin, Italy,
AOU Città della Salute e della Scienza di Torino - Molinette Hospital 
» Adult center
Roberta Camilla  Turin, Italy,
AOU Città della Salute e della Scienza di Torino - Regina Margherita Hospital 
» Ped. center
Bruno Gianoglio  Turin, Italy,
AOU Città della Salute e della Scienza di Torino - Regina Margherita Hospital 
» Ped. center
Francesca Mattozzi  Turin, Italy,
AOU Città della Salute e della Scienza di Torino - Regina Margherita Hospital 
» Ped. center
Licia Peruzzi  Turin, Italy,
AOU Città della Salute e della Scienza di Torino - Regina Margherita Hospital 
» Ped. center
Silvia Pieretti  Turin, Italy,
AOU Città della Salute e della Scienza di Torino - Regina Margherita Hospital 
» Ped. center
Emanuele de Simone  Turin, Italy,
University of Torino-Ospedale HUB Torino Nord 
» Adult center
Roberta Fenoglio  Turin, Italy,
University of Torino-Ospedale HUB Torino Nord 
» Adult center
Dario Roccatello  Turin, Italy,
University of Torino-Ospedale HUB Torino Nord 
» Adult center
Savino Sciascia  Turin, Italy,
University of Torino-Ospedale HUB Torino Nord 
» Adult center
Albertien vanEerde  Utrecht, Netherlands,
University Medical Centre 
» Ped. center
  Agne Cerkauskaite  Vilnius, Lithuania,
Vilnius University Hospital Santaros Klinikos 
» Adult center
Rimante Cerkauskiene  Vilnius, Lithuania,
Vilnius University Hospital Santaros Klinikos 
» Ped. center
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 
Rachel Lennon  External Manchester, Manchester University Foundation Trust 
  Sergio Camilo Lopez Garcia  External London, Great Ormond Street Hospital 
Susana Carvajal Arjona  Patient representative http://hipofam.org/ (Hypomagnesemia) 
Uwe Korst  Patient representative Bundesverband Niere e.V. (Bundesverband-niere.de) 
Johanna Rolfing  Patient representative Nephie e.V./ Idiopathisches Nephrotisches Syndrom 
Evy van Kempen  Patient representative Nierpatienten Vereniging Nederland https://www.nvn.nl/ 
Heidi Zealey  Patient representative Alport UK