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 PKD Familiäre Zystennieren e.V Germany

korst[at]rare-kidney.de

pkdcure.de
Hereditary glomerulopathies

Heidi Zealey

Johanna Rohlfing

Karlheinz Steinecker

Evy van Kempen

Alport UK

Nephie e.V.

AIRG France

NVN

 

UK

Germany

France

Netherlands

 

info[at]alportuk.org

nephieev[at]googlemail.com

karlheinz.steinecker[at]nordnet.fr

vankempen[at]nvn.nl

 

alportuk.org

nephie.de

airg-france.fr

nvn.nl

 

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

nephieev[at]googlemail.com

vankempen[at]nvn.nl

nephie.de

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

Association Gitelbart 

AIRG Belgium

NVN

France

Belgium

Netherlands

contact[at]gitelbart.fr

etienne.cosyns[at]live.com

 

gitelbart.fr

airg-belgique.org

nvn.nl

Thrombotic mircoangiopathies Alena Lass aHus und MPNG Selbsthilfegruppe für komplementbedingte Erkrankungen Germany alenalass[at]yahoo.com ahus-selbsthilfe.de

Francisco Monfort

 

Asociación Síndrome Hemolítico Urémico Atípico (ASHUA)

Spain

 

fmonfort[at]ashua.es

 

ashua.es

 

Evy van Kempen NVN Netherlands vankempen[at]nvn.nl nvn.nl
CAKUT & Ciliopathies

Renée de Wildt

Tess Harris

Marjolein Bos

NVN

PKD UK

Dutch and Flemish Cystinosis Group

Netherlands

UK

Netherlands

dewildt[at]nvn.nl

tess.harris[at]pkdcharity.org.uk

marjoleinbos[at]ziggo.nl

nvn.nl

pkdcharity.org.uk

 cystinose.nl

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

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    
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

 
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

csproedt[at]leben-eben.com

marellano[at]alcer.org

vankempen[at]nvn.nl

cystinose-selbsthilfe.de

nvn.nl

Pediatric Tx

Evy van Kempen

Marieke van Meel

NVN

NephcEurope

Netherlands

Europe

vankempen[at]nvn.nl

mvanmeel[at]casema.nl

nvn.nl

nephceurope.eu