Renal malformations Workgroup

The work group for renal malformations focuses on structural renal disorders that frequently present in childhood. This includes diseases encompassing the spectra of “Congenital abnormalities of the kidney and the urinary tract (CAKUT)” and of “Ciliopathies”. A prominent group of disorders we work on are cystic kidney diseases of childhood. The CAKUT spectrum and the Ciliopathies are clinically, genetically and histologically highly heterogeneous, making treatment and prediction of severe and progressive disease courses challenging. Clear-cut risk factors have not been established for most of the disorders.

Our work group brings together experts from all over Europe, both from Pediatric as well as well as Adult Nephrology centers and includes patient representatives. We aim to lay the foundation for unified clinical treatment concepts and innovative research e.g. towards novel therapeutic strategies. Given the heterogeneity of diseases our work group will closely collaborate with work groups within ERKNet and other ERNs.

Meeting Minutes

WG Meeting on 28th April 2021 (please log in to your member account to view the minutes)

WorkGroup Members

Albertien vanEerde  Speaker Utrecht, Netherlands,
University Medical Centre  		» Ped. center
Max Liebau  Co-Chair Cologne, Germany,
University Hospital  		» Ped. center
Giovanni Montini  Co-Chair Milano, Italy,
IRCCS Ca' Granda Ospedale Maggiore Policlinico  		» Ped. center
Arend Bokenkamp  Amsterdam, Netherlands,
Amsterdam, Academic Medical Center (AMC)  		» Ped. center
Antonia Bouts  Amsterdam, Netherlands,
Amsterdam, Academic Medical Center (AMC)  		» Ped. center
Rik Westland  Amsterdam, Netherlands,
Amsterdam, Academic Medical Center (AMC)  		» Ped. center
Gema Ariceta  Barcelona, Spain,
Hospital Universitari Vall d'Hebron  		» Ped. center
  Marino Asensio  Barcelona, Spain,
Hospital Universitari Vall d'Hebron  		» Ped. center
  Gloria Fraga  Barcelona, Spain,
Hospital Universitari Vall d'Hebron  		» Ped. center
  Romy Gander  Barcelona, Spain,
Hospital Universitari Vall d'Hebron  		» Ped. center
  Gloria Royo  Barcelona, Spain,
Hospital Universitari Vall d'Hebron  		» Ped. center
  Karin Dahan  Brussels, Belgium,
Cliniques universitaires Saint-Luc - UCL  		» Adult center
Olivier Devuyst  Brussels, Belgium,
Cliniques universitaires Saint-Luc - UCL  		» Adult center
  Axel Feyaerts  Brussels, Belgium,
Cliniques universitaires Saint-Luc - UCL  		» Adult center
Nathalie Godefroid  Brussels, Belgium,
Cliniques universitaires Saint-Luc - UCL  		» Adult center
  Sören Bäumner  Cologne, Germany,
University Hospital  		» Ped. center
Kathrin Burgmaier  Cologne, Germany,
University Hospital  		» Ped. center
  Volker Burst  Cologne, Germany,
University Hospital  		» Adult center
Sandra Habbig  Cologne, Germany,
University Hospital  		» Ped. center
  Stefan Kohl  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
  Lorenzo Masieri  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
  Piotr Czarniak  Gdansk, Poland,
University Clinical Centre Gdansk  		» Ped. center
Beata Lipska-Zietkiewicz  Gdansk, Poland,
University Clinical Centre Gdansk  		» Adult center
Michal Maternik  Gdansk, Poland,
University Clinical Centre Gdansk  		» Ped. center
Aleksandra Zurowska  Gdansk, Poland,
University Clinical Centre Gdansk  		» Ped. center
  Monica Bodria  Genova, Italy,
Istituto Giannina Gaslini  		» Ped. center
Gianluca Caridi  Genova, Italy,
Istituto Giannina Gaslini  		» Ped. center
Gian Marco Ghiggeri  Genova, Italy,
Istituto Giannina Gaslini  		» Ped. center
Giorgio Piaggio  Genova, Italy,
Istituto Giannina Gaslini  		» Ped. center
Dieter Haffner  Hannover, Germany,
Hannover Medical School  		» Ped. center
  Imke Hennies  Hannover, Germany,
Hannover Medical School  		» Ped. center
Ruthild Weber  Hannover, Germany,
Hannover Medical School  		» Ped. 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
Tanja Wlodkowski  Heidelberg, Germany,
University Hospital  		» Ped. center
Elke Wühl  Heidelberg, Germany,
University Hospital  		» Ped. center
  Elisa Ylinen  Helsinki, Finland,
Children´s Hospital, Helsinki University Hospital  		» Ped. center
  Bert Bammens  Leuven, Belgium,
University Hospitals Leuven  		» Adult center
  Guy Bogaerts  Leuven, Belgium,
University Hospitals Leuven  		» 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
Djalila Mekahli  Leuven, Belgium,
University Hospitals Leuven  		» Ped. center
  Gianluigi Ardissino  Milano, Italy,
IRCCS Ca' Granda Ospedale Maggiore Policlinico  		» Ped. center
Valentina Capone  Milano, Italy,
IRCCS Ca' Granda Ospedale Maggiore Policlinico  		» Ped. center
Sara Testa  Milano, Italy,
IRCCS Ca' Granda Ospedale Maggiore Policlinico  		» Ped. center
Jens Koenig  Münster, Germany,
University Hospital  		» Ped. center
  Petra Pennekamp  Münster, Germany,
University Hospital  		» Ped. center
Giovambattista Capasso  Naples, Italy,
UOC Nephrology and Dialysis - Università della Campania  		» Adult center
Stefano Guarino  Naples, Italy,
UOC Nephrology and Dialysis - Università della Campania  		» Ped. center
Pierluigi Marzuillo  Naples, Italy,
UOC Nephrology and Dialysis - Università della Campania  		» Ped. center
Guiseppe Orefice  Naples, Italy,
UOC Nephrology and Dialysis - Università della Campania  		» Adult center
Mariadelina Simeoni  Naples, Italy,
UOC Nephrology and Dialysis - Università della Campania  		» Adult center
Miriam Zacchia  Naples, Italy,
UOC Nephrology and Dialysis - Università della Campania  		» Adult center
  Ernie Bongers  Nijmegen, Netherlands,
Radboud UMC  		» Adult center
Charlotte Bootsma  Nijmegen, Netherlands,
Radboud UMC  		» Ped. center
Tom Nijenhuis  Nijmegen, Netherlands,
Radboud UMC  		» Adult center
Michiel Schreuder  Nijmegen, Netherlands,
Radboud UMC  		» Ped. center
Nicole vandeKar  Nijmegen, Netherlands,
Radboud UMC  		» Ped. center
  Davide Meneghesso  Padova, Italy,
Azienda Ospedaliera di Padova  		» Ped. center
Luisa Murer  Padova, Italy,
Azienda Ospedaliera di Padova  		» Ped. center
Susanna Negrisolo  Padova, Italy,
Azienda Ospedaliera di Padova  		» 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
Pietro Manuel Ferraro  Rome, Italy,
Gemelli Hospital  		» Adult center
Laura Massella  Rome, Italy,
Rome, Bambino Gesù Children's Hospital  		» Ped. center
Peter Barany  Stockholm, Sweden,
Karolinska University Hospital  		» Adult center
Maria Herthelius  Stockholm, Sweden,
Karolinska University Hospital  		» Ped. center
Simone Baldovino  Torino, Italy,
University of Torino-Ospedale HUB Torino Nord  		» Adult center
Dario Roccatello  Torino, Italy,
University of Torino-Ospedale HUB Torino Nord  		» Adult center
Stephane Decramer  Toulouse, France,
Toulouse, University Hospital  		» Ped. center
  Joost Schanstra  Toulouse, France,
Toulouse, University Hospital  		» Ped. center
Stephanie Tellier  Toulouse, France,
Toulouse, University Hospital  		» Ped. center
  Tom de Jong  Utrecht, Netherlands,
University Medical Centre  		» Ped. center
  Aart Klijn  Utrecht, Netherlands,
University Medical Centre  		» Ped. center
  Marc Lilien  Utrecht, Netherlands,
University Medical Centre  		» Ped. center
Gilvydas Verkauskas  Vilnius, Lithuania,
Vilnius University Hospital Santaros Klinikos  		» Ped. center
  Daniel Gale  External Royal Free London 
  Nicola Persico  External Ospedale Maggiore Policlinico, Milan, Italy 
  John Sayer  External Institute of Genetic Medicine, Newcastle University 
Kjell Tullus  External London, Great Ormond Street Hospital 
  Johan Vande Walle  External Gent, UZ Gent 
Adrian Woolf  External Manchester, Manchester University Foundation Trust 
  Marjolein Bos  Patient representative https://cystinose.nl (Cystinosis) 
Susana Carvajal Arjona  Patient representative http://hipofam.org/ (Hypomagnesemia) 
  Renée de Wild  Patient representative Nierpatienten Vereniging Nederland https://www.nvn.nl/ 
  Flavia Galetti  Patient representative https://pkdinternational.org/ (PKD) 
Tess Harris  Patient representative https://pkdcharity.org.uk (PKD) 
  Uwe Korst  Patient representative PKD Familiäre Zystennieren e.V.