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
  Gema Ariceta  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
Agnes Trautmann  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
  Jahnukainen Timo  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
  Alan Salama  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 
» 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
Luisa Murer  Padova, Italy,
Azienda Ospedaliera di Padova 
» Ped. 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
  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
Roberta Fenoglio  Torino, Italy,
San Giovanni Bosco Hospital and University of Torino 
» 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 
  Karolina Pawlak  External Children's HealthIreland (CHI) at Temple Street 
  Roser Torra  External Servicio de Nefrología, Fundació Puigvert 
  Zofia Lisiecka  Patient representative Gdansk 
  Bartek Najdekier  Patient representative Gdansk 
Daniel Renault  Patient representative FEDERG 

European Reference Networks
ERKNet is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Commission.
For more information about the ERNs and the EU health strategy, please visit http://ec.europa.eu/health/ern