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