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

s.carvajal[at]hipofam.org


 

hipofam.org

 

 

 

Uwe Korst

Bundesverband Niere e.V

 

Germany Korst[at]rare-kidney.de BNeV.de

Hereditary glomerulopathies

 

Heidi Zealey

 

Alport UK

UK

info[at]alportuk.org

alportuk.org

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

nephieev[at]googlemail.com

nephie.de

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

contact[at]gitelbart.fr

etienne.cosyns[at]live.com

dewildt[at]nvn.nl

davidvanbennekom[at]gmail.com

gitelbart.fr

airg-belgique.org

nvn.nl

-

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

 

fmonfort[at]ashua.es

 

ashua.es

 

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

dewildt[at]nvn.nl

flaviag.airp[at]renepolicistico.it

nvn.nl

pkdinternational.org

Autosomal dominant renal structural disorders

Flavia Galletti

 

AIRP Italy flaviag.airp[at]renepolicistico.it pkdinternational.org

Uwe Korst

PKD Familiäre Zystennieren e.V.

Germany

korst[at]rare-kidney.de

pkdcure.de

Karlheinz Steinecker AIRG France France karlheinz.steinecker[at]nordnet.fr airg-france.fr
Michel Schenkel FEDRG Belgium    
Christian Scheidler ADTKD Germany
Christian.Scheidler[at]outlook.de  
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

 cystinose.nl

David van Bennekom - Netherlands

davidvanbennekom[at]gmail.com

-
  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

csproedt[at]leben-eben.com

marellano[at]alcer.org

dewildt[at]nvn.nl

cystinose-selbsthilfe.de

nvn.nl

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

Korst[at]rare-kidney.de

BNeV.de