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@leben-eben.com cystinose-selbsthilfe.de
Hereditary glomerulopathies Heidi Zealey Alport UK UK info[at]alportuk.org

alportuk.org

Immune glomerulopathies Marieke van Meel NephcEurope Europe mvanmeel@casema.nl nephceurope.eu
Johanna Rohlfing Nephie e.V./ Idiopathisches Nephrotisches Syndrom Germany nephieev@googlemail.com nephie.de
Tubulopathies Antonio Cabrera Cantero,        Susana Carvajal Arjona Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) Spain consultas@hipofam.org hipofam.org

Virginia Guillon

 

Etienne Cosyns

Association Gitelbart 

 

AIRG Belgium

France

 

Belgium

contact[at]gitelbart.fr

 

etienne.cosyns[at]live.com

gitelbart.fr

 

airg-belgique.org

Thrombotic mircoangiopathies Alena Lass aHus und MPNG Selbsthilfegruppe für komplementbedingte Erkrankungen Germany alenalass@yahoo.com ahus-selbsthilfe.de
Francisco Monfort Asociación Síndrome Hemolítico Urémico Atípico (ASHUA) Spain fmonfort@ashua.es ashua.es
CAKUT & Ciliopathies          
Autosomal dominant renal structural disorders Tess Harris PKD UK UK tess.harris@pkdcharity.org.uk pkdcharity.org.uk
Flavia Galetti AIRP Italy flaviag.airp@renepolicistico.it pkdinternational.org
Uwe Korst PKD Familiäre Zystennieren e.V. Germany Korst@PKDcure.de pkdcure.de
Metabolic nephropathies Claudia Sproedt Cystinose Selbsthilfe e.V. Germany csproedt@leben-eben.com cystinose-selbsthilfe.de
Marjolein Bos Cystinose Groep Nederland Netherlands marjoleinbos@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@leben-eben.com

 

 

marellano[at]alcer.org

cystinose-selbsthilfe.de

 

 

 

Pediatric Tx Evy van Kempen NVN Netherlands vankempen@nvn.nl nvn.nl