ERKNet

The European Rare Kidney Disease Reference Network

  

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.


WorkGroup Members

Max Liebau  Speaker Cologne, Germany,
University Hospital 
» Ped. center
  Laurence Heidet  Co-Chair Paris, France,
Necker-Enfants Malades University Hospital 
» Ped. center
Albertien vanEerde  Co-Chair Utrecht, Netherlands,
University Medical Centre 
» Ped. 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
  Olivier Devuyst  Brussels, Belgium,
Cliniques universitaires Saint-Luc - UCL 
» Adult center
  Nathalie Godefroid  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
  Sandra Habbig  Cologne, Germany,
University Hospital 
» Ped. center
  Christine Kurschat  Cologne, Germany,
University Hospital 
» Adult center
  Roman-Ulrich Mueller  Cologne, Germany,
University Hospital 
» Adult center
  Peter Hoyer  Essen, Germany,
University Children`s Hospital 
» Ped. center
  Francesca Becherucci  Florence, Italy,
Meyer Children’s Hospital 
» Ped. center
  Piotr Czarniak  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
  Monica Bodria  Genova, Italy,
Istituto Giannina Gaslini 
» Ped. center
  Gianluca Caridi  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
Franz Schaefer  Heidelberg, Germany,
University Hospital 
» Ped. center
  Elke Wühl  Heidelberg, Germany,
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
  Bert Bammens  Leuven, Belgium,
University Hospitals Leuven 
» Adult center
  Kathleen Claes  Leuven, Belgium,
University Hospitals Leuven 
» Adult center
Djalila Mekahli  Leuven, Belgium,
University Hospitals Leuven 
» Ped. center
  Marleen van den Hijkant  Leuven, Belgium,
University Hospitals Leuven 
» Ped. center
  Wesley Hayes  London, United Kingdom,
Great Ormond Street Hospital 
» Ped. center
  Kjell Tullus  London, United Kingdom,
Great Ormond Street Hospital 
» Ped. center
  JD Paul Winyard  London, United Kingdom,
Great Ormond Street Hospital 
» Ped. 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
  Adrian Woolf  Manchester, United Kingdom,
Manchester University Foundation Trust 
» Ped. center
Jens Koenig  Münster, Germany,
University Hospital 
» Ped. center
  Petra Pennekamp  Münster, Germany,
University Hospital 
» Ped. center
  Valentina Capone  Milano, Italy,
Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico 
» Ped. center
  Giovanni Montini  Milano, Italy,
Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico 
» Ped. center
  Giovanni Capasso  Naples, Italy,
UOC Nephrology and Dialysis - Università della Campania 
» Adult center
  Angela La Manna  Naples, Italy,
UOC Nephrology and Dialysis - Università della Campania 
» Ped. center
  Ernie Bongers  Nijmegen, Netherlands,
Radboud UMC 
» Adult center
  Michiel Schreuder  Nijmegen, Netherlands,
Radboud UMC 
» Adult 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
  Giacomo Di Zazzo  Rome, Italy,
Rome, Bambino Gesù Children's Hospital 
» Ped. center
Laura Massella  Rome, Italy,
Rome, Bambino Gesù Children's Hospital 
» Ped. center
Simone Baldovino  Torino, Italy,
San Giovanni Bosco Hospital and University of Torino 
» Adult center
  Stephane Decramer  Toulouse, France,
Toulouse, University Hospital 
» Ped. center
  Aart Klijn  Utrecht, Netherlands,
University Medical Centre 
» Ped. center
  Marc Lilien  Utrecht, Netherlands,
University Medical Centre 
» Ped. center
  John Sayer  External Institute of Genetic Medicine, Newcastle University 
  Marie-Jeanne Pierrat  Patient representative  
Daniel Renault  Patient representative FEDERG 
Harris Tess  Patient representative PKD International and the Ciliopathy alliance 

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