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 | csproedt@leben-eben.com | |
Hereditary glomerulopathies | Daniel Renault | AIRG-France | France | daniel.renault34@orange.fr | |
Immune glomerulopathies | Marieke van Meel | NephcEurope | Europe | mvanmeel@casema.nl | |
Tubulopathies | Antonio Cabrera Cantero | Hipofam | Spain | consultas@hipofam.org | |
Susana Carvajal Arjona | Hipofam | Spain | consultas@hipofam.org | ||
Thrombotic mircoangiopathies | Alena Lass | MPGN and aHUS e.V. | Germany | alenalass@yahoo.com | |
Francisco Monfort | ASHUA | Spain | fmonfort@ashua.es | ||
Marjolein Storm | NVN | Netherlands | Storm@nvn.nl | ||
CAKUT & Ciliopathies | |||||
Autosomal dominant renal structural disorders | Tess Harris | PKD UK | UK | tess.harris@pkdcharity.org.uk | |
Flavia Galetti | ARPKD | Italy | gallettiflavia@gmail.com | ||
Metabolic nephropathies | Claudia Sproedt | Cystinose Selbsthilfe e.V. | Germany | csproedt@leben-eben.com | |
Marjolein Bos | Netherlands | marjoleinbos@ziggo.nl |
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Pediatric CKD & Dialysis | Claudia Sproedt | Cystinose Selbsthilfe e.V. | Germany | csproedt@leben-eben.com | |
Pediatric Tx | Evy van Kempen | Netherlands | vankempen@nvn.nl |
