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 Claudia Sproedt Cystinose Selbsthilfe e.V. Germany csproedt[at]leben-eben.com cystinose-selbsthilfe.de
Hereditary glomerulopathies

Heidi Zealey

Johanna Rohlfing

Karlheinz Steinecker

Evy van Kempen

Marieke van Meel

Alport UK

Nephie e.V.

AIRG France

NVN

NephcEurope

UK

Germany

France

Netherlands

Europe

info[at]alportuk.org

nephieev[at]googlemail.com

karlheinz.steinecker[at]nordnet.fr

vankempen[at]nvn.nl

mvanmeel[at]casema.nl

alportuk.org

nephie.de

airg-france.fr

nvn.nl

nephceurope.eu

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

Evy van Kempen

Asociación Síndrome Hemolítico Urémico Atípico (ASHUA)

NVN

Spain

Netherlands

fmonfort[at]ashua.es

vankempen[at]nvn.nl

ashua.es

nvn.nl

CAKUT & Ciliopathies

Renée de Wildt

Tess Harris

Marjolein Bos

NVN

PKD UK

Dutch and Flemish Cystinosis Group

Netherlands

UK

Netherlands

 

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

Karlheinz Steinecker

Michel Schenkel

PKD Familiäre Zystennieren e.V.

AIRG France

FEDRG

 

Germany

France

Belgium

Korst[at]PKDcure.de

karlheinz.steinecker[at]nordnet.fr

pkdcure.de

airg-france.fr

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

Pediatric CKD & Dialysis

Claudia Sproedt

Manuell Arellano Armisen

 

 

Cystinose Selbsthilfe e.V.

Federacion Nacional ALCER (FNA) Spanish Kidney Patients Federation

Germany

Spain

csproedt[at]leben-eben.com

marellano[at]alcer.org

 

cystinose-selbsthilfe.de

 

Pediatric Tx

Evy van Kempen

Marieke van Meel

NVN

NephcEurope

Netherlands

Europe

vankempen[at]nvn.nl

mvanmeel[at]casema.nl

nvn.nl

nephceurope.eu