European Patient Advocacy Groups (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.

Learn more about EURORDIS by clicking on the logo.

Meet ERKNet’s ePAG representatives

Network Group	ePAG Representative	Patient Organisation	Country	Contact	Website
ERN Board	Claudia Sproedt	Cystinose Selbsthilfe e.V.	Germany		cystinose-selbsthilfe.de
Hereditary glomerulopathies	Daniel Renault	AIRG-France	France		federg.org
Immune glomerulopathies	Marieke van Meel	NephcEurope	Europe		nephceurope.eu
Immune glomerulopathies	Johanna Rohlfing	Nephie e.V./ Idiopathisches Nephrotisches Syndrom	Germany		nephie.de
Tubulopathies	Antonio Cabrera Cantero	Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam)	Spain		hipofam.org
Tubulopathies	Susana Carvajal Arjona	Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam)	Spain		hipofam.org
Thrombotic mircoangiopathies	Alena Lass	aHus und MPNG Selbsthilfegruppe für komplementbedingte Erkrankungen	Germany		ahus-selbsthilfe.de
	Francisco Monfort	Asociación Síndrome Hemolítico Urémico Atípico (ASHUA)	Spain		ashua.es
	Marjolein Storm	NVN	Netherlands		nvn.nl
CAKUT & Ciliopathies
Autosomal dominant renal structural disorders	Tess Harris	PKD UK	UK		pkdcharity.org.uk
	Flavia Galetti	AIRP	Italy		pkdinternational.org
	Uwe Korst	PKD Familiäre Zystennieren e.V.	Germany		pkdcure.de
Metabolic nephropathies	Claudia Sproedt	Cystinose Selbsthilfe e.V.	Germany		cystinose-selbsthilfe.de
Metabolic nephropathies	Marjolein Bos	Cystinose Groep Nederland	Netherlands		cystinose-selbsthilfe.de
Pediatric CKD & Dialysis	Claudia Sproedt	Cystinose Selbsthilfe e.V.	Germany		cystinose.nl
Pediatric Tx	Evy van Kempen	NVN	Netherlands		nvn.nl