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 GroupePAG RepresentativePatient OrganisationCountryContactWebsite
ERN BoardClaudia SproedtCystinose Selbsthilfe e.V.Germanycsproedt@leben-eben.comcystinose-selbsthilfe.de
Hereditary glomerulopathiesDaniel RenaultAIRG-FranceFrancedaniel.renault34@orange.frfederg.org
Immune glomerulopathiesMarieke van MeelNephcEuropeEuropemvanmeel@casema.nlnephceurope.eu
Johanna RohlfingNephie e.V./ Idiopathisches Nephrotisches SyndromGermanynephieev@googlemail.comnephie.de
TubulopathiesAntonio Cabrera CanteroAsociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam)Spainconsultas@hipofam.orghipofam.org
Susana Carvajal ArjonaAsociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam)Spainconsultas@hipofam.orghipofam.org
Thrombotic mircoangiopathiesAlena LassaHus und MPNG Selbsthilfegruppe für komplementbedingte ErkrankungenGermanyalenalass@yahoo.comahus-selbsthilfe.de
Francisco MonfortAsociación Síndrome Hemolítico Urémico Atípico (ASHUA)Spainfmonfort@ashua.esashua.es
CAKUT & Ciliopathies
Autosomal dominant renal structural disordersTess HarrisPKD UKUKtess.harris@pkdcharity.org.ukpkdcharity.org.uk
Flavia GalettiAIRPItalyflaviag.airp@renepolicistico.itpkdinternational.org
Uwe KorstPKD Familiäre Zystennieren e.V.GermanyKorst@PKDcure.depkdcure.de
Metabolic nephropathiesClaudia SproedtCystinose Selbsthilfe e.V.Germanycsproedt@leben-eben.comcystinose-selbsthilfe.de
Marjolein BosCystinose Groep NederlandNetherlandsmarjoleinbos@ziggo.nl  cystinose-selbsthilfe.de
Pediatric CKD & DialysisClaudia SproedtCystinose Selbsthilfe e.V.Germanycsproedt@leben-eben.comcystinose.nl
Pediatric TxEvy van KempenNVNNetherlandsvankempen@nvn.nlnvn.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