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

www.cystinose-selbsthilfe.de

Hereditary glomerulopathies

Daniel Renault

AIRG-France

France

daniel.renault34@orange.fr

http://federg.org

Immune glomerulopathies

Marieke van Meel

NephcEurope

Europe

mvanmeel@casema.nl

nephceurope.eu

Tubulopathies

Antonio Cabrera Cantero

Hipofam

Spain

consultas@hipofam.org

hipofam.org

Susana Carvajal Arjona

Hipofam

Spain

consultas@hipofam.org

hipofam.org

Thrombotic mircoangiopathies

 Alena Lass 

MPGN and aHUS e.V.

Germany

 alenalass@yahoo.com

www.ahus-selbsthilfe.de

Francisco Monfort

 ASHUA

Spain

fmonfort@ashua.es

www.ashua.es

Marjolein Storm

NVN

Netherlands

Storm@nvn.nl

www.nvn.nl

CAKUT & Ciliopathies

Autosomal dominant renal structural disorders

Tess Harris

PKD UK

UK

tess.harris@pkdcharity.org.uk

pkdcharity.org.uk

Flavia Galetti

ARPKD

Italy

gallettiflavia@gmail.com

pkdinternational.org

Metabolic nephropathies

Claudia Sproedt

Cystinose Selbsthilfe e.V.

Germany

csproedt@leben-eben.com

www.cystinose-selbsthilfe.de

Marjolein Bos

Netherlands

marjoleinbos@ziggo.nl

 

Pediatric CKD & Dialysis

Claudia Sproedt

Cystinose Selbsthilfe e.V.

Germany

csproedt@leben-eben.com

www.cystinose-selbsthilfe.de

Pediatric Tx

Evy van Kempen

Netherlands

vankempen@nvn.nl

www.nvn.nl


European Reference Networks
ERKNet is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Commission.
For more information about the ERNs and the EU health strategy, please visit http://ec.europa.eu/health/ern