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 ERKNets ePAG representatives
Susana Carvajal Arjona
ERN Board, Tubulopathies (Spain)
See her video here.
Uwe Korst
ERN Board, Autosomal dominant renal structural disorders (Germany)
See his video here.
Claudia Sproedt
Metabolic nephropathies, Paediatric CKD & Dialysis (Germany)
See her video here.
Mareike van Meel
Immune glomerulopathies (Europe)
See her video here.
Tess Harris
Autosomal dominant renal structural disorders, CAKUT & Ciliopathies (UK)
See her video here.
Marjolein Bos
Metabolic nephropathies (Netherlands)
See her video here.
| 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 | Bundesverband Niere e.V. | Germany | Bundesverband Niere e.V. | ||
| 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 | ||
| Mireira Vicenta Carratalá Ríos | Asociación Síndrome Hemolítico Urémico Atípico (ASHUA) | Spain | ashua.es | ||
| Renée de Wildt | NVN | Netherlands | nvn.nl | ||
| CAKUT & Ciliopathies | Tess Harris | PKD UK | UK | pkdcharity.org.uk | |
| Autosomal dominant renal structural disorders | Tess Harris | PKD UK | UK | pkdcharity.org.uk | |
| Flavia Galletti | AIRP | Italy | renepolicistico.it | ||
| Uwe Korst | Bundesverband Niere e.V. | Germany | Bundesverband Niere e.V. | ||
| Karlheinz Steinecker | AIRG France | France | airg-france.fr | ||
| Christian Scheidler | ADTKD | Germany | adtkd.de | ||
| Michel Schenkel | AIRG Belgium | Belgium | airg-belgique.org | ||
| Metabolic nephropathies | Claudia Sproedt | Cystinose Selbsthilfe e.V. & Cystinosis Network Europe | Germany | cystinose-selbsthilfe.de & cystinosis-europe.eu | |
| Marjolein Bos | Dutch and Flemish Cystinosis Group & Cystinosis Network Europe | Netherlands | cystinose.nl & cystinosis-europe.eu | ||
| David van Bennekom | Netherlands | ||||
| Pediatric CKD & Dialysis | Claudia Sproedt | Cystinose Selbsthilfe e.V. & Cystinosis Network Europe | Germany | cystinose-selbsthilfe.de & cystinosis-europe.eu | |
| Manuel Arellano Armisen | Federacion Nacional ALCER (FNA) | Spain | https://alcer.org | ||
| Pediatric Tx | Evy van Kempen | NVN | Netherlands | nvn.nl |