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.


For more information on Glomerulopathies visit our disease information Page 

Responsible Project Manager

Vanessa Merck | vanessa.merck@med.uni-heidelberg.de


WorkGroup Members

Kalman Tory  Speaker Budapest, Hungary,
Budapest Semmelweis University 
» Ped. center
Kathleen Claes  Co-Chair Leuven, Belgium,
Leuven University Hospitals 
» Adult center
Guillaume Dorval  Co-Chair Paris, France,
Paris Necker-Enfants Malades University Hospital 
» Ped. center
Antonia Bouts  Amsterdam, Netherlands,
Amsterdam Academic University Medical Center (AUMC) 
» Ped. center
Elena Levtchenko  Amsterdam, Netherlands,
Amsterdam Academic University Medical Center (AUMC) 
» Ped. center
Michiel Oosterveld  Amsterdam, Netherlands,
Amsterdam Academic University Medical Center (AUMC) 
» Ped. center
  Ans van Wijk  Amsterdam, Netherlands,
Amsterdam Academic University Medical Center (AUMC) 
» Ped. center
  Ioannis Boletis  Athens, Greece,
Athens Laiko General Hospital of Athens 
» Adult center
Miquel Blasco  Barcelona, Spain,
Barcelona Hospital Clinic de Barcelona 
» Adult center
Luis Quintana  Barcelona, Spain,
Barcelona Hospital Clinic de Barcelona 
» Adult center
Montserrat Diaz Encarnacion  Barcelona, Spain,
Barcelona Hospital de la Santa Creu I Sant Pau and Fundacio Puigvert/IUNA 
» Adult center
Monica Furlano  Barcelona, Spain,
Barcelona Hospital de la Santa Creu I Sant Pau and Fundacio Puigvert/IUNA 
» Adult center
Helena Marco  Barcelona, Spain,
Barcelona Hospital de la Santa Creu I Sant Pau and Fundacio Puigvert/IUNA 
» Adult center
Roser Torra  Barcelona, Spain,
Barcelona Hospital de la Santa Creu I Sant Pau and Fundacio Puigvert/IUNA 
» Adult center
  Alvaro Madrid  Barcelona, Spain,
Barcelona Hospital San Joan de Deu 
» Ped. center
Loreto Gesualdo  Bari, Italy,
Bari AOU Consorziale policlinico di Bari-Ospedale Pediatrico Giovanni XXIII 
» Adult center
Marica Giliberti  Bari, Italy,
Bari AOU Consorziale policlinico di Bari-Ospedale Pediatrico Giovanni XXIII 
» Adult center
  Kai-Uwe Eckardt  Berlin, Germany,
Berlin Charité - Universitätsmedizin Berlin 
» Adult center
Jan Halbritter  Berlin, Germany,
Berlin Charité - Universitätsmedizin Berlin 
» Adult center
  Dominik Müller  Berlin, Germany,
Berlin Charité - Universitätsmedizin Berlin 
» Ped. center
  Markus Schueler  Berlin, Germany,
Berlin Charité - Universitätsmedizin Berlin 
» Adult center
Irene Capelli  Bologna, Italy,
Bologna AOU Policlinico S. Orsola Bologna 
» Adult center
  Marisa Santostefano  Bologna, Italy,
Bologna AOU Policlinico S. Orsola Bologna 
» Adult center
  Lionel Couzi  Bordeaux, France,
Bordeaux University Hospital 
» Adult center
Astrid Gordon-Dubrasquet  Bordeaux, France,
Bordeaux University Hospital 
» Ped. center
Brigitte Llanas  Bordeaux, France,
Bordeaux University Hospital 
» Ped. center
Claire Rigothier  Bordeaux, France,
Bordeaux University Hospital 
» Adult center
Laura Econimo  Brescia, Italy,
Brescia ASST Spedali Civili Brescia 
» Adult center
Claudia Izzi  Brescia, Italy,
Brescia ASST Spedali Civili Brescia 
» Adult center
  Karin Dahan  Brussels, Belgium,
Brussels Cliniques universitaires Saint-Luc - UCL 
» Adult center
Nathalie Demoulin  Brussels, Belgium,
Brussels Cliniques universitaires Saint-Luc - UCL 
» Adult center
Olivier Devuyst  Brussels, Belgium,
Brussels Cliniques universitaires Saint-Luc - UCL 
» Adult center
Valentine Gillion  Brussels, Belgium,
Brussels Cliniques universitaires Saint-Luc - UCL 
» Adult center
Nathalie Godefroid  Brussels, Belgium,
Brussels Cliniques universitaires Saint-Luc - UCL 
» Adult center
Johann Morelle  Brussels, Belgium,
Brussels Cliniques universitaires Saint-Luc - UCL 
» Adult center
Adrian Catalin Lungu  Bucharest, Romania,
Bucharest Fundeni Clinical Institute 
» Ped. center
Nóra Ledó  Budapest, Hungary,
Budapest Semmelweis University 
» Adult center
Ákos Pethő  Budapest, Hungary,
Budapest Semmelweis University 
» Adult center
George Reusz  Budapest, Hungary,
Budapest Semmelweis University 
» Ped. center
  Péter Sallay  Budapest, Hungary,
Budapest Semmelweis University 
» Ped. center
  Péter Studinger  Budapest, Hungary,
Budapest Semmelweis University 
» Adult center
  Attila Szabo  Budapest, Hungary,
Budapest Semmelweis University 
» Ped. center
András Tislér  Budapest, Hungary,
Budapest Semmelweis University 
» Adult center
Jan Ulrich Becker  Cologne, Germany,
Cologne University Hospital 
» Ped. center
  Thomas Benzing  Cologne, Germany,
Cologne University Hospital 
» Adult center
Kathrin Burgmaier  Cologne, Germany,
Cologne University Hospital 
» Ped. center
  Volker Burst  Cologne, Germany,
Cologne University Hospital 
» Adult center
  Christine Kurschat  Cologne, Germany,
Cologne University Hospital 
» Adult center
Max Liebau  Cologne, Germany,
Cologne University Hospital 
» Ped. center
  Roman-Ulrich Mueller  Cologne, Germany,
Cologne University Hospital 
» Adult center
Lutz Weber  Cologne, Germany,
Cologne 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,
Dublin Beaumont Hospital 
» Adult center
  Declan DeFreitas  Dublin, Ireland,
Dublin Beaumont Hospital 
» Adult center
  Colm Magee  Dublin, Ireland,
Dublin Beaumont Hospital 
» Adult center
  Atif Awan  Dublin, Ireland,
Dublin Children`s Health Ireland (CHI) at Temple Street 
» Ped. center
  Janina Müller-Deile  Erlangen, Germany,
Erlangen University Hospital 
» Adult center
  Michael Wiesener  Erlangen, Germany,
Erlangen University Hospital 
» Adult center
  Thurid Ahlenstiel-Grunow  Essen, Germany,
Essen University Children`s Hospital 
» Ped. center
Anja Büscher  Essen, Germany,
Essen University Children`s Hospital 
» Ped. center
Rainer Büscher  Essen, Germany,
Essen University Children`s Hospital 
» Ped. center
Lars Pape  Essen, Germany,
Essen University Children`s Hospital 
» Ped. center
Francesca Becherucci  Florence, Italy,
Florence Meyer Children’s Hospital IRCCS 
» Ped. center
Paola Romagnani  Florence, Italy,
Florence Meyer Children’s Hospital IRCCS 
» Ped. center
Augusto Vaglio  Florence, Italy,
Florence Meyer Children’s Hospital IRCCS 
» Ped. center
  Irena Bałasz-Chmielewska  Gdansk, Poland,
Gdansk University Clinical Centre 
» Ped. center
  Magdalena Drozynska-Duklas  Gdansk, Poland,
Gdansk University Clinical Centre 
» Ped. center
Beata Lipska-Zietkiewicz  Gdansk, Poland,
Gdansk University Clinical Centre 
» Ped. center
Aleksandra Zurowska  Gdansk, Poland,
Gdansk University Clinical Centre 
» Ped. center
Gianluca Caridi  Genoa, Italy,
Genoa Istituto Giannina Gaslini 
» Ped. center
Francesca Lugani  Genoa, Italy,
Genoa Istituto Giannina Gaslini 
» Ped. center
Joke Dehoorne  Ghent, Belgium,
Ghent UZ Ghent 
» Ped. center
Lien Dossche  Ghent, Belgium,
Ghent UZ Ghent 
» Ped. center
  Agnieszka Prytula  Ghent, Belgium,
Ghent UZ Ghent 
» Ped. center
  Ann Raes  Ghent, Belgium,
Ghent UZ Ghent 
» Ped. center
  Steven Van Laecke  Ghent, Belgium,
Ghent UZ Ghent 
» Adult center
  Wim vanBiesen  Ghent, Belgium,
Ghent UZ Ghent 
» Adult center
Johan Vande Walle  Ghent, Belgium,
Ghent UZ Ghent 
» Ped. center
  Jill Vanmassenhove  Ghent, Belgium,
Ghent UZ Ghent 
» Adult center
Stefan Berger  Groningen, Netherlands,
Groningen University Medical Center 
» Adult center
Charlotte Bootsma-Robroeks  Groningen, Netherlands,
Groningen University Medical Center 
» Ped. center
Mark Eijgelsheim  Groningen, Netherlands,
Groningen University Medical Center 
» Adult center
Casper Franssen  Groningen, Netherlands,
Groningen University Medical Center 
» Adult center
Ron Gansevoort  Groningen, Netherlands,
Groningen University Medical Center 
» Adult center
Valentina Gracchi  Groningen, Netherlands,
Groningen University Medical Center 
» Ped. center
Esther Meijer  Groningen, Netherlands,
Groningen University Medical Center 
» Adult center
Jan-Stephan Sanders  Groningen, Netherlands,
Groningen University Medical Center 
» Adult center
Coen Stegeman  Groningen, Netherlands,
Groningen University Medical Center 
» Adult center
Florian Grahammer  Hamburg, Germany,
Hamburg University Medical Center Hamburg-Eppendorf 
» Adult center
  Thomas Henne  Hamburg, Germany,
Hamburg University Medical Center Hamburg-Eppendorf 
» Ped. center
Tobias B. Huber  Hamburg, Germany,
Hamburg University Medical Center Hamburg-Eppendorf 
» Adult center
Christian Krebs  Hamburg, Germany,
Hamburg University Medical Center Hamburg-Eppendorf 
» Adult center
  Sebastian Loos  Hamburg, Germany,
Hamburg University Medical Center Hamburg-Eppendorf 
» Ped. center
Anne Mühlig  Hamburg, Germany,
Hamburg University Medical Center Hamburg-Eppendorf 
» Ped. center
Jun Oh  Hamburg, Germany,
Hamburg University Medical Center Hamburg-Eppendorf 
» Ped. center
  Jan-Hendrik Riedel  Hamburg, Germany,
Hamburg University Medical Center Hamburg-Eppendorf 
» Adult center
Raphael Schild  Hamburg, Germany,
Hamburg University Medical Center Hamburg-Eppendorf 
» Ped. center
Dieter Haffner  Hannover, Germany,
Hannover Medical School 
» Ped. center
  Svjetlana Lovric  Hannover, Germany,
Hannover Medical School 
» Adult center
  Mario Schiffer  Hannover, Germany,
Hannover Medical School 
» Adult center
Stefanie Haeberle  Heidelberg, Germany,
Heidelberg University Hospital 
» Ped. center
Franz Schaefer  Heidelberg, Germany,
Heidelberg University Hospital 
» Ped. center
Burkhard Toenshoff  Heidelberg, Germany,
Heidelberg University Hospital 
» Ped. center
Agnes Trautmann  Heidelberg, Germany,
Heidelberg University Hospital 
» Ped. center
Tanja Wlodkowski  Heidelberg, Germany,
Heidelberg University Hospital 
» Ped. center
  Tuula Hoelttae  Helsinki, Finland,
Helsinki Children´s Hospital, Helsinki University Hospital 
» Ped. center
  Timo Jahnukainen  Helsinki, Finland,
Helsinki Children´s Hospital, Helsinki University Hospital 
» Ped. center
  Juuso Tainio  Helsinki, Finland,
Helsinki Children´s Hospital, Helsinki University Hospital 
» Ped. center
Friederike Petzold  Leipzig, Germany,
Leipzig University Hospital 
» Adult center
Noel Knops  Leuven, Belgium,
Leuven University Hospitals 
» Ped. center
Tanja Kersnik Levart  Ljubljana, Slovenia,
Ljubljana University Medical Centre 
» Ped. center
Matjaž Kopač  Ljubljana, Slovenia,
Ljubljana University Medical Centre 
» Ped. center
Anamarija Meglič  Ljubljana, Slovenia,
Ljubljana University Medical Centre 
» Ped. center
Gregor Novljan  Ljubljana, Slovenia,
Ljubljana University Medical Centre 
» Ped. center
Rina Rus  Ljubljana, Slovenia,
Ljubljana University Medical Centre 
» Ped. center
  Zeljka Veceric Haler  Ljubljana, Slovenia,
Ljubljana University Medical Centre 
» Adult center
Agnieszka Gach  Lodz, Poland,
Lodz Instytut 
» Ped. center
  Monika Pawlak-Bratkowska  Lodz, Poland,
Lodz Instytut 
» Ped. center
  Małgorzata Stańczyk  Lodz, Poland,
Lodz Instytut 
» Ped. center
Marcin Tkaczyk  Lodz, Poland,
Lodz Instytut 
» Ped. center
Krzysztof Zeman  Lodz, Poland,
Lodz Instytut 
» Ped. center
Aurelia Bertholet-Thomas  Lyon, France,
Lyon Hôpital Femme Mère Enfant & Université de Lyon 
» Ped. center
Anne-Laure Sellier-Leclerc  Lyon, France,
Lyon Hôpital Femme Mère Enfant & Université de Lyon 
» Ped. center
Giovanni Montini  Milan, Italy,
Milan IRCCS Ca' Granda Ospedale Maggiore Policlinico 
» Ped. center
Martin Konrad  Münster, Germany,
Münster University Hospital 
» Ped. center
Ilaria Luongo  Naples, Italy,
Naples A.O. Santobono-Pausilipon 
» Ped. center
Gabriele Malgieri  Naples, Italy,
Naples A.O. Santobono-Pausilipon 
» Ped. center
Luigi Annicchiarico Petruzzelli  Naples, Italy,
Naples A.O. Santobono-Pausilipon 
» Ped. center
  Ernie Bongers  Nijmegen, Netherlands,
Nijmegen Radboud UMC 
» Adult center
  Jeroen Deegens  Nijmegen, Netherlands,
Nijmegen Radboud UMC 
» Adult center
Rutger Maas  Nijmegen, Netherlands,
Nijmegen Radboud UMC 
» Adult center
Michiel Schreuder  Nijmegen, Netherlands,
Nijmegen Radboud UMC 
» Ped. center
Jack Wetzels  Nijmegen, Netherlands,
Nijmegen Radboud UMC 
» Adult center
  Elisa Benetti  Padua, Italy,
Padua Azienda Ospedaliera di Padova 
» Ped. center
  Vincent Audard  Paris, France,
Paris APHP Hôpital Henri Mondor, Paris-Est Creteil 
» Adult center
  Dil Sahali  Paris, France,
Paris APHP Hôpital Henri Mondor, Paris-Est Creteil 
» Adult center
  Véronique Baudouin  Paris, France,
Paris Hospital Robert Debre 
» Ped. center
  Corinne Antignac  Paris, France,
Paris Necker-Enfants Malades University Hospital 
» Ped. center
  Lauréne Dehoux  Paris, France,
Paris Necker-Enfants Malades University Hospital 
» Ped. center
Olivia Gillion-Boyer  Paris, France,
Paris Necker-Enfants Malades University Hospital 
» Ped. center
Laurence Heidet  Paris, France,
Paris Necker-Enfants Malades University Hospital 
» Ped. center
Bertrand Knebelmann  Paris, France,
Paris Necker-Enfants Malades University Hospital 
» Adult center
Aude Servais  Paris, France,
Paris Necker-Enfants Malades University Hospital 
» Adult center
  Idalina Beirão  Porto, Portugal,
Porto Centro Hospitalar Universitário do Porto 
» Adult center
Sofia Correia  Porto, Portugal,
Porto Centro Hospitalar Universitário do Porto 
» Adult center
Liane Correia Costa  Porto, Portugal,
Porto Centro Hospitalar Universitário do Porto 
» Ped. center
  Luisa Lobato  Porto, Portugal,
Porto Centro Hospitalar Universitário do Porto 
» Adult center
  Josefina Santos  Porto, Portugal,
Porto Centro Hospitalar Universitário do Porto 
» Adult center
  Sofia Santos  Porto, Portugal,
Porto Centro Hospitalar Universitário do Porto 
» Adult center
Martin Bezdicka  Prague, Czech Republic,
Prague University Hospital Motol 
» Ped. center
Nadezda Simankova  Prague, Czech Republic,
Prague University Hospital Motol 
» Ped. center
  Dana Thomasova  Prague, Czech Republic,
Prague University Hospital Motol 
» Ped. center
Jakub Zieg  Prague, Czech Republic,
Prague University Hospital Motol 
» Ped. 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
Rocco Baccaro  Rome, Italy,
Rome Gemelli Hospital 
» Adult center
Giuseppe Grandaliano  Rome, Italy,
Rome Gemelli Hospital 
» Adult center
Francesco Pesce  Rome, Italy,
Rome Gemelli Hospital 
» Adult center
  Margherita Baldassarri  Siena, Italy,
Siena University Hospital 
» Adult center
  Andrea Guarnieri  Siena, Italy,
Siena University Hospital 
» Adult center
Anna Maria Pinto  Siena, Italy,
Siena University Hospital 
» Adult center
  Alessandra Renieri  Siena, Italy,
Siena University Hospital 
» Adult center
Peter Barany  Stockholm, Sweden,
Stockholm Karolinska University Hospital 
» Adult center
  Peter Hemmingsson  Stockholm, Sweden,
Stockholm Karolinska University Hospital 
» Adult center
Maria Herthelius  Stockholm, Sweden,
Stockholm Karolinska University Hospital 
» Ped. center
Bogna Niwinska-Faryna  Stockholm, Sweden,
Stockholm Karolinska University Hospital 
» Ped. center
Ariane Benezech  Toulouse, France,
Toulouse University Hospital 
» Ped. center
  Dominique Chauveau  Toulouse, France,
Toulouse University Hospital 
» Adult center
Stephane Decramer  Toulouse, France,
Toulouse University Hospital 
» Ped. center
  Stanislas Faguer  Toulouse, France,
Toulouse University Hospital 
» Adult center
Stephanie Tellier  Toulouse, France,
Toulouse University Hospital 
» Ped. center
Luigi Biancone  Turin, Italy,
Turin AOU Città della Salute e della Scienza di Torino - Molinette Hospital 
» Adult center
Elena Boaglio  Turin, Italy,
Turin AOU Città della Salute e della Scienza di Torino - Molinette Hospital 
» Adult center
Manuel Burdese  Turin, Italy,
Turin AOU Città della Salute e della Scienza di Torino - Molinette Hospital 
» Adult center
Caterina Dolla  Turin, Italy,
Turin AOU Città della Salute e della Scienza di Torino - Molinette Hospital 
» Adult center
Roberta Giraudi  Turin, Italy,
Turin AOU Città della Salute e della Scienza di Torino - Molinette Hospital 
» Adult center
Roberta Camilla  Turin, Italy,
Turin AOU CSS di Torino - Regina Margherita Hospital 
» Ped. center
Bruno Gianoglio  Turin, Italy,
Turin AOU CSS di Torino - Regina Margherita Hospital 
» Ped. center
Francesca Mattozzi  Turin, Italy,
Turin AOU CSS di Torino - Regina Margherita Hospital 
» Ped. center
Licia Peruzzi  Turin, Italy,
Turin AOU CSS di Torino - Regina Margherita Hospital 
» Ped. center
Silvia Pieretti  Turin, Italy,
Turin AOU CSS di Torino - Regina Margherita Hospital 
» Ped. center
Emanuele de Simone  Turin, Italy,
Turin University of Torino-Ospedale HUB Torino Nord 
» Adult center
Roberta Fenoglio  Turin, Italy,
Turin University of Torino-Ospedale HUB Torino Nord 
» Adult center
Dario Roccatello  Turin, Italy,
Turin University of Torino-Ospedale HUB Torino Nord 
» Adult center
Savino Sciascia  Turin, Italy,
Turin University of Torino-Ospedale HUB Torino Nord 
» Adult center
Albertien vanEerde  Utrecht, Netherlands,
Utrecht 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
  Agne Kerpauskiene  Vilnius, Lithuania,
Vilnius University Hospital Santaros Klinikos 
» Adult 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) 
  Rossella Ferrari  Patient representative Associazione Sindrome di Alport Odv 
Uwe Korst  Patient representative Bundesverband Niere e.V. (Bundesverband-niere.de) 
Johanna Rohlfing  Patient representative Nephie e.V./ Idiopathisches Nephrotisches Syndrom 
  Katerina Romanenkoev  Patient representative  
  Ana Leticia Rotaeche  Patient representative AIRG Spain 
Heidi Zealey  Patient representative Alport UK