It is generally a late-onset multisystem disorder characterized by bilateral kidney cysts, liver cysts, and an increased risk of intracranial aneurysms. Other manifestations include: cysts in the pancreas, seminal vesicles, and arachnoid membrane; dilatation of the aortic root and dissection of the thoracic aorta; mitral valve prolapse; and abdominal wall hernias. Kidney manifestations include early-onset hypertension, kidney pain, and kidney insufficiency. Approximately 50% of individuals with ADPKD have end-stage kidney disease (ESKD) by age 60 years.
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Olivier Devuyst | Speaker |
Brussels, Belgium, Cliniques universitaires Saint-Luc - UCL |
» Adult center |
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Jan Halbritter | Co-Chair |
Berlin, Germany, Charité - Universitätsmedizin Berlin |
» Adult center |
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Djalila Mekahli | Co-Chair |
Leuven, Belgium, University Hospitals Leuven |
» Ped. center |
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Henrik Birn |
Aarhus, Denmark, University Hospital |
» Adult center | |
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Mia Faerch |
Aarhus, Denmark, University Hospital |
» Ped. center | |
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Elena Levtchenko |
Amsterdam, Netherlands, Amsterdam, Academic University Medical Center (AUMC) |
» Ped. center | |
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Roser Torra |
Barcelona, Spain, Hospital de la Santa Creu I Sant Pau and Fundacio Puigvert/IUNA |
» Adult center | |
Gloria Fraga |
Barcelona, Spain, Hospital Universitari Vall d'Hebron |
» Ped. center | ||
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Vincenza Carbone |
Bari, Italy, AOU Consorziale policlinico di Bari-Ospedale Pediatrico Giovanni XXIII |
» Ped. center | |
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Loreto Gesualdo |
Bari, Italy, AOU Consorziale policlinico di Bari-Ospedale Pediatrico Giovanni XXIII |
» Adult center | |
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Mario Giordano |
Bari, Italy, AOU Consorziale policlinico di Bari-Ospedale Pediatrico Giovanni XXIII |
» Ped. center | |
Marida Martino |
Bari, Italy, AOU Consorziale policlinico di Bari-Ospedale Pediatrico Giovanni XXIII |
» Ped. center | ||
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Giovanni Piscopo |
Bari, Italy, AOU Consorziale policlinico di Bari-Ospedale Pediatrico Giovanni XXIII |
» Adult center | |
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Luisa Santangelo |
Bari, Italy, AOU Consorziale policlinico di Bari-Ospedale Pediatrico Giovanni XXIII |
» Ped. center | |
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Diletta Torres |
Bari, Italy, AOU Consorziale policlinico di Bari-Ospedale Pediatrico Giovanni XXIII |
» Ped. center | |
Kai-Uwe Eckardt |
Berlin, Germany, Charité - Universitätsmedizin Berlin |
» Adult center | ||
Dominik Müller |
Berlin, Germany, Charité - Universitätsmedizin Berlin |
» Ped. center | ||
Christian Rosenberger |
Berlin, Germany, Charité - Universitätsmedizin Berlin |
» Adult center | ||
Markus Schueler |
Berlin, Germany, Charité - Universitätsmedizin Berlin |
» Adult center | ||
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Irene Capelli |
Bologna, Italy, AOU Policlinico S. Orsola Bologna |
» Adult center | |
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Lise Allard |
Bordeaux, France, University Hospital |
» Ped. center | |
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Christian Combe |
Bordeaux, France, University Hospital |
» Adult center | |
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Astrid Gordon-Dubrasquet |
Bordeaux, France, University Hospital |
» Ped. center | |
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Roberta Cortinovis |
Brescia, Italy, ASST Spedali Civili Brescia |
» Adult center | |
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Chiara Dordoni |
Brescia, Italy, ASST Spedali Civili Brescia |
» Adult center | |
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Laura Econimo |
Brescia, Italy, ASST Spedali Civili Brescia |
» Adult center | |
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Claudia Izzi |
Brescia, Italy, ASST Spedali Civili Brescia |
» Adult center | |
Francesco Scolari |
Brescia, Italy, ASST Spedali Civili Brescia |
» Adult center | ||
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Letizia Zeni |
Brescia, Italy, ASST Spedali Civili Brescia |
» Adult center | |
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Nathalie Demoulin |
Brussels, Belgium, Cliniques universitaires Saint-Luc - UCL |
» Adult center | |
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Nathalie Godefroid |
Brussels, Belgium, Cliniques universitaires Saint-Luc - UCL |
» Adult center | |
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Thien Anh Ho |
Brussels, Belgium, Cliniques universitaires Saint-Luc - UCL |
» Adult center | |
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George Reusz |
Budapest, Hungary, Semmelweis University |
» Ped. center | |
Péter Sallay |
Budapest, Hungary, Semmelweis University |
» Ped. center | ||
Attila Szabó |
Budapest, Hungary, Semmelweis University |
» Ped. center | ||
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András Tislér |
Budapest, Hungary, Semmelweis University |
» Adult center | |
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Kalman Tory |
Budapest, Hungary, Semmelweis University |
» Ped. center | |
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Sita Arjune |
Cologne, Germany, University Hospital |
» Adult center | |
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Kathrin Burgmaier |
Cologne, Germany, University Hospital |
» Ped. center | |
Volker Burst |
Cologne, Germany, University Hospital |
» Adult center | ||
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Max Liebau |
Cologne, Germany, University Hospital |
» Ped. center | |
Roman-Ulrich Mueller |
Cologne, Germany, University Hospital |
» Adult center | ||
Lene Boesby |
Copenhagen, Denmark, Rigshospitalet University Hospital |
» Adult center | ||
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Mette Damholt |
Copenhagen, Denmark, Rigshospitalet University Hospital |
» Adult center | |
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Ida Maria Schmidt |
Copenhagen, Denmark, Rigshospitalet University Hospital |
» Ped. center | |
Jens Schmidt Iversen |
Copenhagen, Denmark, Rigshospitalet University Hospital |
» Adult center | ||
Peter J Conlon |
Dublin, Ireland, Beaumont Hospital |
» Adult center | ||
Atif Awan |
Dublin, Ireland, Children`s Health Ireland (CHI) at Temple Street |
» Ped. center | ||
Björn Buchholz |
Erlangen, Germany, University Hospital |
» Adult center | ||
Schödel Johannes |
Erlangen, Germany, University Hospital |
» Adult center | ||
Michael Wiesener |
Erlangen, Germany, University Hospital |
» Adult center | ||
Thurid Ahlenstiel-Grunow |
Essen, Germany, University Children`s Hospital |
» Ped. center | ||
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Francesca Becherucci |
Florence, Italy, Meyer Children’s Hospital IRCCS |
» Ped. center | |
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Paola Romagnani |
Florence, Italy, Meyer Children’s Hospital IRCCS |
» Ped. center | |
Alicja Debska-Slizien |
Gdansk, Poland, University Clinical Centre Gdansk |
» Adult center | ||
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Magdalena Jankowska |
Gdansk, Poland, University Clinical Centre Gdansk |
» Adult center | |
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Agnieszka Tarasewicz |
Gdansk, Poland, University Clinical Centre Gdansk |
» Adult center | |
Iga Zaluska-Lesniewska |
Gdansk, Poland, University Clinical Centre Gdansk |
» Ped. center | ||
Monica Bodria |
Genoa, Italy, Istituto Giannina Gaslini |
» Ped. center | ||
Ann Raes |
Ghent, Belgium, UZ Ghent |
» Ped. center | ||
Wim vanBiesen |
Ghent, Belgium, UZ Ghent |
» Adult center | ||
Jill Vanmassenhove |
Ghent, Belgium, UZ Ghent |
» Adult center | ||
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Martine Besouw |
Groningen, Netherlands, University Medical Center |
» Ped. center | |
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Charlotte Bootsma-Robroeks |
Groningen, Netherlands, University Medical Center |
» Ped. center | |
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Ron Gansevoort |
Groningen, Netherlands, University Medical Center |
» Adult center | |
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Esther Meijer |
Groningen, Netherlands, University Medical Center |
» Adult center | |
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Stefanie Haeberle |
Heidelberg, Germany, University Hospital |
» Ped. center | |
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Franz Schaefer |
Heidelberg, Germany, University Hospital |
» Ped. center | |
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Burkhard Toenshoff |
Heidelberg, Germany, University Hospital |
» Ped. center | |
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Tanja Wlodkowski |
Heidelberg, Germany, University Hospital |
» Ped. center | |
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Johan de Fijter |
Leiden, Netherlands, Leiden University Medical Center |
» Adult center | |
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Jonathan de Fallois |
Leipzig, Germany, University Hospital |
» Adult center | |
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Friederike Petzold |
Leipzig, Germany, University Hospital |
» Adult center | |
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Bert Bammens |
Leuven, Belgium, University Hospitals Leuven |
» Adult center | |
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Kathleen Claes |
Leuven, Belgium, University Hospitals Leuven |
» Adult center | |
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Vincent Guigonis |
Limoges, France, University Hospital |
» Ped. center | |
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Tanja Kersnik Levart |
Ljubljana, Slovenia, University Medical Centre |
» Ped. center | |
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Rina Rus |
Ljubljana, Slovenia, University Medical Centre |
» Ped. center | |
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Agnieszka Gach |
Lodz, Poland, Instytut |
» Ped. center | |
Monika Pawlak-Bratkowska |
Lodz, Poland, Instytut |
» Ped. center | ||
Małgorzata Stańczyk |
Lodz, Poland, Instytut |
» Ped. center | ||
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Marcin Tkaczyk |
Lodz, Poland, Instytut |
» Ped. center | |
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Bruno Ranchin |
Lyon, France, Hôpital Femme Mère Enfant & Université de Lyon |
» Ped. center | |
Marta Moreno |
Madrid, Spain, Hospital Universitario 12 de Octubre |
» Adult center | ||
Maria Teresa Sánchez |
Madrid, Spain, Hospital Universitario 12 de Octubre |
» Adult center | ||
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Giovanni Montini |
Milan, Italy, IRCCS Ca' Granda Ospedale Maggiore Policlinico |
» Ped. center | |
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Jens Koenig |
Münster, Germany, University Hospital |
» Ped. center | |
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Ilaria Luongo |
Naples, Italy, A.O. Santobono-Pausilipon |
» Ped. center | |
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Gabriele Malgieri |
Naples, Italy, A.O. Santobono-Pausilipon |
» Ped. center | |
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Luigi Annicchiarico Petruzzelli |
Naples, Italy, A.O. Santobono-Pausilipon |
» Ped. center | |
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Giovambattista Capasso |
Naples, Italy, UOC Nephrology and Dialysis - Università della Campania |
» Adult center | |
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Francesco Trepiccione |
Naples, Italy, UOC Nephrology and Dialysis - Università della Campania |
» Adult center | |
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Miriam Zacchia |
Naples, Italy, UOC Nephrology and Dialysis - Università della Campania |
» Adult center | |
Ernie Bongers |
Nijmegen, Netherlands, Radboud UMC |
» Adult center | ||
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Tom Nijenhuis |
Nijmegen, Netherlands, Radboud UMC |
» Adult center | |
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Jack Wetzels |
Nijmegen, Netherlands, Radboud UMC |
» Adult center | |
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Lorenzo Calo |
Padua, Italy, Azienda Ospedaliera di Padova |
» Adult center | |
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Gianni Carraro |
Padua, Italy, Azienda Ospedaliera di Padova |
» Adult center | |
Valeria Silecchia |
Padua, Italy, Azienda Ospedaliera di Padova |
» Ped. center | ||
Claire Dossier |
Paris, France, Hospital Robert Debre |
» Ped. center | ||
Corinne Antignac |
Paris, France, Necker-Enfants Malades University Hospital |
» Ped. center | ||
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Olivia Gillion-Boyer |
Paris, France, Necker-Enfants Malades University Hospital |
» Ped. center | |
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Laurence Heidet |
Paris, France, Necker-Enfants Malades University Hospital |
» Ped. center | |
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Bertrand Knebelmann |
Paris, France, Necker-Enfants Malades University Hospital |
» Adult center | |
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Aude Servais |
Paris, France, Necker-Enfants Malades University Hospital |
» Adult center | |
Idalina Beirão |
Porto, Portugal, Centro Hospitalar Universitário do Porto |
» Adult center | ||
Sofia Santos |
Porto, Portugal, Centro Hospitalar Universitário do Porto |
» Adult center | ||
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Ana Teixeira |
Porto, Portugal, Centro Hospitalar Universitário do Porto |
» Ped. center | |
Matteo Bargagli |
Rome, Italy, Gemelli Hospital |
» Adult center | ||
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Pietro Manuel Ferraro |
Rome, Italy, Gemelli Hospital |
» Adult center | |
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Giuseppe Grandaliano |
Rome, Italy, Gemelli Hospital |
» Adult center | |
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Francesco Emma |
Rome, Italy, Rome, Bambino Gesù Children's Hospital |
» Ped. center | |
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Laura Massella |
Rome, Italy, Rome, Bambino Gesù Children's Hospital |
» Ped. center | |
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Huib De Jong |
Rotterdam, Netherlands, Erasmus MC: University Medical Center Rotterdam |
» Ped. center | |
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Eiske Dorresteijn |
Rotterdam, Netherlands, Erasmus MC: University Medical Center Rotterdam |
» Ped. center | |
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Ewout Hoorn |
Rotterdam, Netherlands, Erasmus MC: University Medical Center Rotterdam |
» Adult center | |
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Jaap Mulder |
Rotterdam, Netherlands, Erasmus MC: University Medical Center Rotterdam |
» Ped. center | |
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Mahdi Salih |
Rotterdam, Netherlands, Erasmus MC: University Medical Center Rotterdam |
» Adult center | |
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Jeroen Scheepe |
Rotterdam, Netherlands, Erasmus MC: University Medical Center Rotterdam |
» Ped. center | |
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Robert Zietse |
Rotterdam, Netherlands, Erasmus MC: University Medical Center Rotterdam |
» Adult center | |
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Peter Barany |
Stockholm, Sweden, Karolinska University Hospital |
» Adult center | |
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Bogna Niwinska-Faryna |
Stockholm, Sweden, Karolinska University Hospital |
» Ped. center | |
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Stephane Decramer |
Toulouse, France, Toulouse, University Hospital |
» Ped. center | |
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Thomas Simon |
Toulouse, France, Toulouse, University Hospital |
» Ped. center | |
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Luigi Biancone |
Turin, Italy, AOU Città della Salute e della Scienza di Torino - Molinette Hospital |
» Adult center | |
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Elena Boaglio |
Turin, Italy, AOU Città della Salute e della Scienza di Torino - Molinette Hospital |
» Adult center | |
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Manuel Burdese |
Turin, Italy, AOU Città della Salute e della Scienza di Torino - Molinette Hospital |
» Adult center | |
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Caterina Dolla |
Turin, Italy, AOU Città della Salute e della Scienza di Torino - Molinette Hospital |
» Adult center | |
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Roberta Giraudi |
Turin, Italy, AOU Città della Salute e della Scienza di Torino - Molinette Hospital |
» Adult center | |
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Roberta Camilla |
Turin, Italy, AOU CSS di Torino - Regina Margherita Hospital |
» Ped. center | |
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Bruno Gianoglio |
Turin, Italy, AOU CSS di Torino - Regina Margherita Hospital |
» Ped. center | |
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Francesca Mattozzi |
Turin, Italy, AOU CSS di Torino - Regina Margherita Hospital |
» Ped. center | |
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Licia Peruzzi |
Turin, Italy, AOU CSS di Torino - Regina Margherita Hospital |
» Ped. center | |
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Silvia Pieretti |
Turin, Italy, AOU CSS di Torino - Regina Margherita Hospital |
» Ped. center | |
Marc Lilien |
Utrecht, Netherlands, University Medical Centre |
» Ped. center | ||
Maarten Rookmaaker |
Utrecht, Netherlands, University Medical Centre |
» Adult center | ||
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Albertien vanEerde |
Utrecht, Netherlands, University Medical Centre |
» Ped. center | |
Marius Miglinas |
Vilnius, Lithuania, Vilnius University Hospital Santaros Klinikos |
» Adult center | ||
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Emilie Cornec-Le Gall | External | Brest University Hospital | |
Daniel Gale | External | Royal Free London | ||
John Sayer | External | Institute of Genetic Medicine, Newcastle University | ||
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Susana Carvajal Arjona | Patient representative | http://hipofam.org/ (Hypomagnesemia) | |
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Flavia Galletti | Patient representative | https://pkdinternational.org/ (PKD) | |
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Uwe Korst | Patient representative | Bundesverband Niere e.V. (Bundesverband-niere.de) | |
Christian Scheidler | Patient representative | |||
Michel Schenkel | Patient representative | AIRG Belgium | ||
Karlheinz Steinecker | Patient representative | AIRG France |