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

Alport UK

Nephie e.V.

 

UK

Germany

 

info[at]alportuk.org

nephieev[at]googlemail.com

 

alportuk.org

nephie.de

 

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

Tess Harris

Flavia Galletti

NVN

PKD UK

AIRP

Netherlands

UK

Italy

dewildt[at]nvn.nl

tess.harris[at]pkdcharity.org.uk

flaviag.airp[at]renepolicistico.it

nvn.nl

pkdcharity.org.uk

pkdinternational.org

Autosomal dominant renal structural disorders Tess Harris PKD UK UK tess.harris[at]pkdcharity.org.uk pkdcharity.org.uk
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 Tess Harris PKD UK UK tess.harris[at]pkdcharity.org.uk pkdcharity.org.uk
  Uwe Korst PKD Familiäre Zystennieren e.V Germany korst[at]rare-kidney.de pkdcure.de