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 | cystinose-selbsthilfe.de |
| Hereditary glomerulopathies | Heidi Zealey | Alport UK | UK | info[at]alportuk.org | |
| Immune glomerulopathies | Marieke van Meel | NephcEurope | Europe | mvanmeel@casema.nl | nephceurope.eu |
| Johanna Rohlfing | Nephie e.V./ Idiopathisches Nephrotisches Syndrom | Germany | nephieev@googlemail.com | nephie.de | |
| Tubulopathies | Antonio Cabrera Cantero, Susana Carvajal Arjona | Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) | Spain | consultas@hipofam.org | hipofam.org |
Virginia Guillon
Etienne Cosyns | Association Gitelbart
AIRG Belgium | France
Belgium |
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| Thrombotic mircoangiopathies | Alena Lass | aHus und MPNG Selbsthilfegruppe für komplementbedingte Erkrankungen | Germany | alenalass@yahoo.com | ahus-selbsthilfe.de |
| Francisco Monfort | Asociación Síndrome Hemolítico Urémico Atípico (ASHUA) | Spain | fmonfort@ashua.es | ashua.es | |
| CAKUT & Ciliopathies | |||||
| Autosomal dominant renal structural disorders | Tess Harris | PKD UK | UK | tess.harris@pkdcharity.org.uk | pkdcharity.org.uk |
| Flavia Galetti | AIRP | Italy | flaviag.airp@renepolicistico.it | pkdinternational.org | |
| Uwe Korst | PKD Familiäre Zystennieren e.V. | Germany | Korst@PKDcure.de | pkdcure.de | |
| Metabolic nephropathies | Claudia Sproedt | Cystinose Selbsthilfe e.V. | Germany | csproedt@leben-eben.com | cystinose-selbsthilfe.de |
| Marjolein Bos | Cystinose Groep Nederland | Netherlands | marjoleinbos@ziggo.nl | ||
| Pediatric CKD & Dialysis | Claudia Sproedt
Manuell Arellano Armisen | Cystinose Selbsthilfe e.V.
Federacion Nacional ALCER (FNA) Spanish Kidney Patients Federation
| Germany
Spain | csproedt@leben-eben.com
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| Pediatric Tx | Evy van Kempen | NVN | Netherlands | vankempen@nvn.nl | nvn.nl |