ePAG Representatives’ Involvement in Working Groups
| Network Group | ePAG Representative | Patient Organisation | Country | Contact | Website |
ERN Board ePAG chair
| Susana Carvajal Arjona
| Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) | Spain
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Uwe Korst
| Bundesverband Niere | Germany | korst[at]rare-kidney.de | bnev.de | |
| New Co-Chair from Feb 2025 | David vanBennekom | NVN - Dent's Disease | Netherlands | DavidvanBennekom[at]nvn.nl | https://dent.nl |
| Hereditary glomerulopathies | Heidi Zealey Johanna Rohlfing Margherita Venturini Katerina Romanenko
| Alport UK
Nephie e.V. Associazione Sindrome di Alport Supporting partner for Schimke Immuno-osseous Dysplasia AIRG Spain | UK
Germany Italy Bulgaria
Spain |
margheritaventurini.asal[at]gmail.com
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| Immune glomerulopathies | Johanna Rohlfing (Group Chair) | Nephie e.V./ Idiopathisches Nephrotisches Syndrom | Germany | nephieev[at]googlemail.com | nephie.de |
Renée de Wildt Karsten Vanden Wyngaert
| NVN Supporting partner for IgA Vasculitis
ARGE Niere | Netherlands Belgium
Austria | Karsten.VandenWyngaert[at]uzgent.be
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| Rajmund Michalski | Moje Nerki | Poland | osod[at]osod.info | https://moje-nerki.pl/ | |
| Tubulopathies | Virginia Guillon (Group Chair) Antonio Cabrera Cantero, Susana Carvajal Arjona | Association Gitelbart Asociación para la información y la investigación de la | France Spain | ||
Etienne Cosyns Renée de Wildt David van Bennekom | AIRG Belgium NVN Supporting partner for Dent's Disease | Belgium Netherlands Netherlands | - | ||
| Thrombotic mircoangiopathies | Renée de Wildt (Group Chair) | NVN | Netherlands | dewildt[at]nvn.nl | nvn.nl |
| Mireira Vicenta Carratalá Ríos | aHus und MPNG Selbsthilfegruppe für komplementbedingte Erkrankungen | Germany | mcarratala[at]ashua.es | ahus-selbsthilfe.de | |
| Francisco Monfort | Asociación Síndrome Hemolítico Urémico Atípico (ASHUA) | Spain
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| Christiane Mockenhaupt | MPGN und aHUS e.V. | Germany | christiane.mockenhaupt[at]ahus-selbsthilfe.de | ahus-selbsthilfe.de | |
| Milena Ivic | Donorstvo je herojstvo | Serbia | milena.ivic4@gmail.com | https://www.donorstvojeherojstvo.rs/ | |
| CAKUT & Ciliopathies | Flavia Galletti (Group Chair) Renée de Wildt Sarah Bingham | AIRP NVN Supporting partner for Nephronophtisis | Italy Netherlands UK | - | |
| Autosomal dominant renal structural disorders | Uwe Korst | Bundesverband Niere | Germany | korst[at]rare-kidney.de | bnev.de |
| Flavia Galletti | AIRP | Italy | flaviagalletti@renepolicistico.it | https://www.renepolicistico.it pkdinternational.org | |
| Karlheinz Steinecker | AIRG France | France | karlheinz.steinecker[at]nordnet.fr | airg-france.fr | |
| Michel Schenkel | FEDRG | Belgium | michel.schenkel[at]skynet.be | https://www.airg-belgique.org/fr/ | |
| Christian Scheidler (Group Chair) | ADTKD | Germany | adtkd.de | ||
| Rachel Giles | VHL Europa | Netherlands | rachelhelengiles@gmail.com | vhl-europa.org | |
| Metabolic nephropathies | Marjolein Bos (Group Chair) | Cystinose Groep Nederland | Netherlands | marjoleinbos[at]ziggo.nl | cystinose.nl |
| Claudia Sproedt | Cystinose Selbsthilfe e.V. | Germany | csproedt[at]leben-eben.com | cystinose-selbsthilfe.de | |
| David van Bennekom | Supporting partner for Dent's Disease | Netherlands | davidvanbennekom[at]nvn.nl | https://dent.nl | |
| Mariann Molnar | PH Europe | Hungary | mariannmail[at]gmail.com | https://ph-europe.net | |
| Pediatric CKD & Dialysis | Manuell Arellano Armisen (Group Chair)
Claudia Sproedt | Federacion Nacional ALCER (FNA) Spanish Kidney Patients Federation
| Spain
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| Susana Carvajal | Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) | Spain | s.carvajal[at]hipofam.org | hipofam.org | |
| Mireira Vicenta Carratalá Ríos | aHus und MPNG Selbsthilfegruppe für komplementbedingte Erkrankungen | Germany | mcarratala[at]ashua.es | https://ashua.es | |
| Pediatric Tx | Uwe Korst | Bundesverband Niere | Germany | korst[at]rare-kidney.de | bnev.de |