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 | Susana Carvajal Arjona | Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) | Spain | hipofam.org | |
| Uwe Korst | PKD Familiäre Zystennieren e.V. | Germany | pkdcure.de | ||
| Hereditary glomerulopathies | Heidi Zealey | Alport UK | UK | alportuk.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 | Virginia Guillon | Gitelbart Association | France | gitelbart.fr | |
| Etienne Cosyns | AIRG Belgium | Belgium | airg-belgique.org | ||
| 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 | Tess Harris | PKD UK | UK | pkdcharity.org.uk | |
| Autosomal dominant renal structural disorders | Tess Harris | PKD UK | UK | pkdcharity.org.uk | |
| Flavia Galetti | AIRP | Italy | renepolicistico.it | ||
| Uwe Korst | PKD Familiäre Zystennieren e.V. | Germany | pkdcure.de | ||
| Karlheinz Steinecker | AIRG France | France | airg-france.fr | ||
| 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 | |
| Manuel Arellano Armisen | Federacion Nacional ALCER (FNA) | Spain | https://alcer.org | ||
| Pediatric Tx | Evy van Kempen | NVN | Netherlands | nvn.nl |
Susana Carvajal Arjona
ERN Board, Tubulopathies (Spain)
ERKNet for Patients – The European Rare Kidney Disease Reference Network
Uwe Korst
ERN Board, Autosomal dominant renal structural disorders (Germany)
ERKNet for Patients – The European Rare Kidney Disease Reference Network
Claudia Sproedt
Metabolic nephropathies, Paediatric CKD & Dialysis (Germany)
ERKNet for Patients – The European Rare Kidney Disease Reference Network
Heidi Zealey
Hereditary glomerulopathies (UK)
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
Virginia Guillon
Tubulopathies (France)
ERKNet for Patients – The European Rare Kidney Disease Reference Network
Etienne Cosyns
Tubulopathies (Belgium)
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
Alena 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, CAKUT & Ciliopathies (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 Network
Karlheinz Steinecker
Autosomal dominant renal structural disorders (France)
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
Manuel Arellano Armisen
Paediatric CKD & Dialysis (Spain)
ERKNet for Patients – The European Rare Kidney Disease Reference Network