All informations about our ePAG representatives
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 | 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 Rossella Ferrari 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 |
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| Immune glomerulopathies | Johanna Rohlfing (Group Chair) | Nephie e.V./ Idiopathisches Nephrotisches Syndrom | Germany | ||||
Renée de Wildt Karsten Vanden Wyngaert Katerina Romanenkoev
| NVN Supporting partner for IgA Vasculitis Supporting partner for Schimke Immuno-osseous Dysplasia ARGE Niere | Netherlands Belgium Bulgaria
| Karsten.VandenWyngaert[at]uzgent.be
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| 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 | |||
| 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 (Group Chair) | Bundesverband Niere | Germany | ||||
| Flavia Galletti | AIRP | Italy | flaviagalletti[at]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 | ADTKD | Germany |
| adtkd.de | |||
| Metabolic nephropathies | Marjolein Bos (Group Chair) | Cystinose Groep Nederland | Netherlands | marjoleinbos[at]ziggo.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 | 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 Renée de Wildt | Federacion Nacional ALCER (FNA) Spanish Kidney Patients Federation
NVN | 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 |