ERKNet

The European Rare Kidney Disease Reference Network

  

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

Olivia Boyer  Speaker Paris, France, Necker-Enfants Malades University Hospital  » Ped. center
Paola Romagnani  Co-Chair Florence, Italy, Meyer Children’s Hospital  » Ped. center
Franz Schaefer  Co-Chair Heidelberg, Germany, University Hospital  » Ped. center
Jaap Groothoff  Amsterdam, Netherlands, Amsterdam, Academic Medical Center (AMC)  » Ped. center
Michiel Oosterveld  Amsterdam, Netherlands, Amsterdam, Academic Medical Center (AMC)  » Ped. center
Alvaro Madrid  Barcelona, Spain, Hospital Universitari Vall d'Hebron  » Ped. center
Arrigo Schieppati  Bergamo, Italy, Azienda Ospedaliera Papa Giovanni XXIII  » Adult center
Larissa Kerecuk  Birmingham, United Kingdom, Birmingham Women´s and Children´s Hospital  » Ped. center
Karin Dahan  Brussels, Belgium, Cliniques universitaires Saint-Luc - UCL  » Adult center
Nathalie Demoulin  Brussels, Belgium, Cliniques universitaires Saint-Luc - UCL  » Adult center
Valentine Gillion  Brussels, Belgium, Cliniques universitaires Saint-Luc - UCL  » Adult center
Thomas Benzing  Cologne, Germany, University Hospital  » Adult 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
Francesca Becherucci  Florence, Italy, Meyer Children’s Hospital  » Ped. center
Sabrina Giglio  Florence, Italy, Meyer Children’s Hospital  » Ped. center
Irena Balasz Chmielewska  Gdansk, Poland, University Clinical Centre Gdansk  » Ped. center
Beata Lipska  Gdansk, Poland, University Clinical Centre Gdansk  » Adult center
Aleksandra Zurowska  Gdansk, Poland, University Clinical Centre Gdansk  » Ped. center
Gianluca Caridi  Genova, Italy, Istituto Giannina Gaslini  » Ped. center
Francesca Lugani  Genova, Italy, Istituto Giannina Gaslini  » Ped. center
Thomas Henne  Hamburg, Germany, UKE University Hospital  » Ped. center
Sebastian Loos  Hamburg, Germany, UKE University Hospital  » Ped. center
Anne Mühlig  Hamburg, Germany, UKE University Hospital  » Ped. center
Jun Oh  Hamburg, Germany, UKE University Hospital  » Ped. center
Jan-Hendrik Riedel  Hamburg, Germany, UKE University Hospital  » Adult center
Raphael Schild  Hamburg, Germany, UKE University Hospital  » Ped. center
Florian Thiel  Hamburg, Germany, UKE University Hospital  » Ped. center
Jan-Eric Turner  Hamburg, Germany, UKE University Hospital  » Adult center
Thurid Ahlenstiel  Hannover, Germany, Hannover Medical School  » Ped. center
Mario Schiffer  Hannover, Germany, Hannover Medical School  » Adult center
Giulia Bassanese  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
Hannu Jalanko  Helsinki, Finland, Children´s Hospital, Helsinki University Hospital  » Ped. center
Elisa Ylinen  Helsinki, Finland, Children´s Hospital, Helsinki University Hospital  » Ped. center
Kathleen Claes  Leuven, Belgium, University Hospitals Leuven  » Adult center
Elena Levtchenko  Leuven, Belgium, University Hospitals Leuven  » Ped. center
Aoife Waters  London, United Kingdom, Great Ormond Street Hospital  » Ped. center
John Connolly  London, United Kingdom, Royal Free Hospital  » Adult center
D Gale  London, United Kingdom, Royal Free Hospital  » Adult center
Robert Kleta  London, United Kingdom, Royal Free Hospital  » Adult center
Pierre Cochat  Lyon, France, Hôpital Femme Mère Enfant & Université de Lyon  » Ped. center
Durga Kanigicherla  Manchester, United Kingdom, Manchester University Foundation Trust  » Adult center
Rachel Lennon  Manchester, United Kingdom, Manchester University Foundation Trust  » Ped. center
Martin Konrad  Münster, Germany, University Hospital  » Ped. center
Antonio Mastrangelo  Milano, Italy, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, University of Milan  » Ped. center
Ilaria Luongo  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
Ernie Bongers  Nijmegen, Netherlands, Radboud UMC  » Adult center
Jeroen Deegens  Nijmegen, Netherlands, Radboud UMC  » Adult center
Tom Nijenhuis  Nijmegen, Netherlands, Radboud UMC  » Adult center
Jack Wetzels  Nijmegen, Netherlands, Radboud UMC  » Adult center
Elisa Benetti  Padova, Italy, Azienda Ospedaliera di Padova  » Ped. center
Laura Cesca  Padova, Italy, Azienda Ospedaliera di Padova  » Ped. center
Luisa Murer  Padova, Italy, Azienda Ospedaliera di Padova  » Ped. center
Dil Sahali  Paris, France, Assistance Publique des Hôpitaux de Paris, Hôpital Henri Mondor, Paris-Est Cre  » Adult center
Corinne Antignac  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
Dana Thomasova  Prague, Czech Republic, University Hospital Motol  » 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
Dominique Chauveau  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
Karolis Azukaitis  Vilnius, Lithuania, Vilnius university Hospital Santaros klinikos  » Ped. center
Rimante Cerkauskiene  Vilnius, Lithuania, Vilnius university Hospital Santaros klinikos  » Ped. center
Augustina Jankauskiene  Vilnius, Lithuania, Vilnius university Hospital Santaros klinikos  » Ped. center
Camillo Carrara  External Bergamo 
Roser Torra  External Servicio de Nefrología, Fundació Puigvert 
Zofia Lisiecka  Patient representative Gdansk 
Bartek Najdekier  Patient representative Gdansk 
Daniel Renault  Patient representative FEDERG