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
|
|
| ||
Uwe Korst | PKD Familiäre Zystennieren e.V | Germany | pkdcure.de | ||||
Hereditary glomerulopathies | Heidi Zealey Johanna Rohlfing Rossella Ferrari | Alport UK Nephie e.V. Associazione Sindrome di Alport | UK Germany Italy | ||||
Immune glomerulopathies | Marieke van Meel | NephcEurope | Europe | mvanmeel[at]casema.nl | nephceurope.eu | ||
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 - | 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
|
|
| |||
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 Tess Harris Flavia Galletti | NVN PKD UK AIRP | Netherlands UK Italy | tess.harris[at]pkdcharity.org.uk flaviag.airp[at]renepolicistico.it | |||
Autosomal dominant renal structural disorders | Tess Harris | PKD UK | UK | tess.harris[at]pkdcharity.org.uk | pkdcharity.org.uk | ||
Flavia Galletti | AIRP | Italy | flaviag.airp[at]renepolicistico.it | pkdinternational.org | |||
Uwe Korst | PKD Familiäre Zystennieren e.V. | Germany | |||||
Karlheinz Steinecker | AIRG France | France | karlheinz.steinecker[at]nordnet.fr | airg-france.fr | |||
Michel Schenkel | FEDRG | Belgium | |||||
Christian Scheidler | ADTKD | Germany |
| adtkd.de | |||
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 | - | Netherlands | - | ||||
Tina Verschure | - | 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 | Tess Harris | PKD UK | UK | tess.harris[at]pkdcharity.org.uk | pkdcharity.org.uk | ||
Uwe Korst | PKD Familiäre Zystennieren e.V | Germany | korst[at]rare-kidney.de | pkdcure.de |