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 in the different ERN networks.
Dedicated rare kidney disease patient advocates work closely with clinicians, researchers and other healthcare professionals in the ERKNet, consisting of more than 7 European healthcare providers and can ensure that the patient voice is heard within the network.
If you have any questions or comments, or if you would also like to become active in our network as a patient, please contact our ePAGs representatives Susana Carvajal Arjona & Uwe Korst - patients@erknet.org
Visit our ERKNet patient website to find out more Information about ERKNet ePAGs and EURORDIS.
Overview:
| 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 |
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| Uwe Korst | Bundesverband Niere e.V
| Germany | Korst[at]rare-kidney.de | BNeV.de | |||
Hereditary glomerulopathies
| Heidi Zealey
| Alport UK | UK | ||||
Johanna Rohlfing
| Nephie e.V. | Germany | nephieev[at]googlemail.com | nephie.de | |||
| Katerina Romanenko | - | Bulgaria | romanenkoev[at]gmail.com | - | |||
| Immune glomerulopathies | Marieke van Meel
| NephcEurope | Europe | mvanmeel[at]casema.nl | nephceurope.eu | ||
Johanna Rohlfing | Nephie e.V./ Idiopathisches Nephrotisches Syndrom | Germany | |||||
Renée de Wildt
| NVN | Netherlands | dewildt[at]nvn.nl | nvn.nl | |||
| 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 David van Bennekom | Association Gitelbart AIRG Belgium NVN - | France Belgium Netherlands Netherlands | - | ||||
| Thrombotic mircoangiopathies | Mireira Vicenta Carratalá Ríos | aHus und MPNG Selbsthilfegruppe für komplementbedingte Erkrankungen | Germany | mcarratala[at]ashua.es | ahus-selbsthilfe.de | ||
Francisco Monfort
| Asociación Síndrome Hemolítico Urémico Atípico (ASHUA) | Spain
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| Renée de Wildt | NVN | Netherlands | dewildt[at]nvn.nl | nvn.nl | |||
| Christiane Mockenhaupt | MPGN und aHUS e.V. | Germany | christiane.mockenhaupt[at]ahus-selbsthilfe.de | ahus-selbsthilfe.de | |||
| CAKUT & Ciliopathies | Renée de Wildt Flavia Galletti | NVN AIRP | Netherlands Italy | flaviag.airp[at]renepolicistico.it | |||
| Autosomal dominant renal structural disorders | Flavia Galletti
| AIRP | Italy | flaviag.airp[at]renepolicistico.it | pkdinternational.org | ||
Uwe Korst | PKD Familiäre Zystennieren e.V. | Germany | |||||
| Karlheinz Steinecker | AIRG France | France | karlheinz.steinecker[at]nordnet.fr | airg-france.fr | |||
| Michel Schenkel | FEDRG | Belgium | |||||
| Christian Scheidler | ADTKD | Germany |
| adtkd.de | |||
| 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 | ||||
| David van Bennekom | - | Netherlands | - | ||||
| Tina Verschure | - | Belgium | tverschuere@hotmail.com | - | |||
| Pediatric CKD & Dialysis | Claudia Sproedt Manuell Arellano Armisen | Cystinose Selbsthilfe e.V. Federacion Nacional ALCER (FNA) Spanish Kidney Patients Federation | Germany Spain Netherlands | ||||
| Susana Carvajal | Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) | Spain | s.carvajal[at]hipofam.org | hipofam.org | |||
| Mireira Vicenta Carratalá Ríos | aHus und MPNG Selbsthilfegruppe für komplementbedingte Erkrankungen | Germany | mcarratala[at]ashua.es | ahus-selbsthilfe.de | |||
| Pediatric Tx | Uwe Korst | Bundesverband Niere e.V | Germany |