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European Patient Advocacy Groups (ePAGs)
EURORDIS, a non-governmental patient-driven alliance of patient organisations, has developed a European Patient Advocacy Group (ePAG) for each ERN disease grouping.
ePAGs will bring together elected patient advocates and affiliated organisations who will ensure that the patient voice is heard throughout the ERN development process.
It is important that patient advocates and clinicians evolve how they work together in the new system of ERNs.
Learn more about EURORDIS by clicking on the logo.
Meet ERKNet’s ePAG representatives
| Network Group | ePAG Representative | Patient Organisation | Country | Contact | Website |
| ERN Board | Claudia Sproedt | Cystinose Selbsthilfe e.V. | Germany | cystinose-selbsthilfe.de | |
| Hereditary glomerulopathies | Daniel Renault | AIRG-France | France | federg.org | |
| Immune glomerulopathies | Marieke van Meel | NephcEurope | Europe | nephceurope.eu | |
| Johanna Rohlfing | Nephie e.V./ Idiopathisches Nephrotisches Syndrom | Germany | nephie.de | ||
| Evy van Kempen | NVN | Netherlands | nvn.nl | ||
| Tubulopathies | Antonio Cabrera Cantero | Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) | Spain | hipofam.org | |
| Susana Carvajal Arjona | Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) | Spain | hipofam.org | ||
| Thrombotic mircoangiopathies | Alena Lass | aHus und MPNG Selbsthilfegruppe für komplementbedingte Erkrankungen | Germany | ahus-selbsthilfe.de | |
| Francisco Monfort | Asociación Síndrome Hemolítico Urémico Atípico (ASHUA) | Spain | ashua.es | ||
| CAKUT & Ciliopathies | |||||
| Autosomal dominant renal structural disorders | Tess Harris | PKD UK | UK | pkdcharity.org.uk | |
| Flavia Galetti | AIRP | Italy | pkdinternational.org | ||
| Uwe Korst | PKD Familiäre Zystennieren e.V. | Germany | pkdcure.de | ||
| Metabolic nephropathies | Claudia Sproedt | Cystinose Selbsthilfe e.V. | Germany | cystinose-selbsthilfe.de | |
| Marjolein Bos | Dutch and Flemish Cystinosis Group & Cystinosis Network Europe | Netherlands | cystinose.nl & cystinosis-europe.eu | ||
| Pediatric CKD & Dialysis | Claudia Sproedt | Cystinose Selbsthilfe e.V. | Germany | cystinose.nl | |
| Pediatric Tx | Evy van Kempen | NVN | Netherlands | nvn.nl |
Claudia Sproedt
ERN Board, Metabolic nephropathies, Paediatric CKD & Dialysis (Germany)
ERKNet for Patients – The European Rare Kidney Disease Reference Network
Daniel Renault
Hereditary glomerulopathies (France)
ERKNet for Patients – The European Rare Kidney Disease Reference Network
Marieke van Meel
Immune glomerulopathies (Europe)
ERKNet for Patients – The European Rare Kidney Disease Reference Network
Johanna Rohlfing
Immune glomerulopathies (Europe)
ERKNet for Patients – The European Rare Kidney Disease Reference Network
Antonio Cabrera Cantero
Tubulopathies (Spain)
ERKNet for Patients – The European Rare Kidney Disease Reference Network
Susana Carvajal Arjona
Tubulopathies (Spain)
ERKNet for Patients – The European Rare Kidney Disease Reference NetworkAlena Lass
Thrombotic mircoangiopathies (Germany)
ERKNet for Patients – The European Rare Kidney Disease Reference Network
Francisco Monfort
Thrombotic mircoangiopathies (Spain)
ERKNet for Patients – The European Rare Kidney Disease Reference Network
Tess Harris
Autosomal dominant renal structural disorders (UK)
ERKNet for Patients – The European Rare Kidney Disease Reference Network
Flavia Galetti
Autosomal dominant renal structural disorders (Italy)
ERKNet for Patients – The European Rare Kidney Disease Reference NetworkUwe Korst
Autosomal dominant renal structural disorders (Germany)
ERKNet for Patients – The European Rare Kidney Disease Reference Network
Marjolein Bos
Metabolic nephropathies (Netherlands)
ERKNet for Patients – The European Rare Kidney Disease Reference Network