All informations about our ePAG representives
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 | ||||
| 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 | UK Germany Italy Bulgaria | - | |||
| Immune glomerulopathies | Johanna Rohlfing | Nephie e.V./ Idiopathisches Nephrotisches Syndrom | Germany | ||||
| Renée de Wildt | NVN | Netherlands | dewildt[at]nvn.nl | nvn.nl | |||
| Tubulopathies | Antonio Cabrera Cantero, Susana Carvajal Arjona | Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) | Spain | consultas[at]hipofam.org | hipofam.org | ||
Virginia Guillon Etienne Cosyns Renée de Wildt David van Bennekom | Association Gitelbart AIRG Belgium NVN Supporting partner for Dent's Disease | France Belgium Netherlands Netherlands | - | ||||
| Thrombotic mircoangiopathies | 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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| Renée de Wildt | NVN | Netherlands | dewildt[at]nvn.nl | nvn.nl | |||
| Christiane Mockenhaupt | MPGN und aHUS e.V. | Germany | christiane.mockenhaupt[at]ahus-selbsthilfe.de | ahus-selbsthilfe.de | |||
| CAKUT & Ciliopathies | Renée de Wildt Flavia Galletti | NVN AIRP | Netherlands Italy | flaviag.airp[at]renepolicistico.it | |||
| Autosomal dominant renal structural disorders | Flavia Galletti | AIRP | Italy | flaviag.airp[at]renepolicistico.it | pkdinternational.org | ||
Uwe Korst | Bundesverband Niere | Germany | |||||
| Karlheinz Steinecker | AIRG France | France | karlheinz.steinecker[at]nordnet.fr | airg-france.fr | |||
| Michel Schenkel | FEDRG | Belgium | - | - | |||
| Christian Scheidler | ADTKD | Germany |
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| Metabolic nephropathies | Claudia Sproedt | Cystinose Selbsthilfe e.V. | Germany | csproedt[at]leben-eben.com | cystinose-selbsthilfe.de | ||
| Marjolein Bos | Cystinose Groep Nederland | Netherlands | marjoleinbos[at]ziggo.nl | ||||
| David van Bennekom | Supporting partner for Dent's Disease | Netherlands | - | ||||
| Tina Verschure | Supporting partner for Lowe Syndrome | Belgium | tverschuere@hotmail.com | - | |||
| Pediatric CKD & Dialysis | Claudia Sproedt Manuell Arellano Armisen | Cystinose Selbsthilfe e.V. Federacion Nacional ALCER (FNA) Spanish Kidney Patients Federation | Germany Spain Netherlands | ||||
| 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 | ahus-selbsthilfe.de | |||
| Pediatric Tx | Uwe Korst | Bundesverband Niere | Germany | korst[at]rare-kidney.de | bnev.de |