European Patient Advocacy Group (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.

Visit our ERKNet patient website to find out more Information about ERKNet ePAGs and EURORDIS.


Network Group ePAG Representative Patient Organisation Country Contact Website
ERN Board Claudia Sproedt Cystinose Selbsthilfe e.V. Germany
Hereditary glomerulopathies Heidi Zealey Alport UK UK info[at]

Immune glomerulopathies Marieke van Meel NephcEurope Europe
Johanna Rohlfing Nephie e.V./ Idiopathisches Nephrotisches Syndrom Germany
Tubulopathies Antonio Cabrera Cantero,        Susana Carvajal Arjona Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) Spain

Virginia Guillon


Etienne Cosyns

Association Gitelbart 


AIRG Belgium







Thrombotic mircoangiopathies Alena Lass aHus und MPNG Selbsthilfegruppe für komplementbedingte Erkrankungen Germany
Francisco Monfort Asociación Síndrome Hemolítico Urémico Atípico (ASHUA) Spain
CAKUT & Ciliopathies          
Autosomal dominant renal structural disorders Tess Harris PKD UK UK
Flavia Galetti AIRP Italy

Uwe Korst

Karlheinz Steinecker

PKD Familiäre Zystennieren e.V.

AIRG France





Metabolic nephropathies Claudia Sproedt Cystinose Selbsthilfe e.V. Germany
Marjolein Bos Cystinose Groep Nederland Netherlands

Pediatric CKD & Dialysis

Claudia Sproedt


Manuell Arellano Armisen

Cystinose Selbsthilfe e.V.


Federacion Nacional ALCER (FNA) Spanish Kidney Patients Federation












Pediatric Tx Evy van Kempen NVN Netherlands