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 ERKNets ePAG representatives

Network GroupePAG RepresentativePatient OrganisationCountryContactWebsite
ERN Board Susana Carvajal Arjona Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) Spain hipofam.org
Uwe KorstBundesverband Niere e.V.GermanyBundesverband Niere e.V.
Hereditary glomerulopathies Heidi Zealey Alport UK UK alportuk.org
Immune glomerulopathies Marieke van Meel NephcEuropeEurope nephceurope.eu
Johanna RohlfingNephie e.V./ Idiopathisches Nephrotisches SyndromGermanynephie.de
Evy van Kempen NVN Netherlands nvn.nl
Tubulopathies Virginia Guillon Gitelbart AssociationFrance gitelbart.fr
Etienne CosynsAIRG BelgiumBelgiumairg-belgique.org
Antonio Cabrera Cantero Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) Spain hipofam.org
Susana Carvajal Arjona Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) Spain hipofam.org
Thrombotic mircoangiopathies Alena LassaHus und MPNG Selbsthilfegruppe für komplementbedingte ErkrankungenGermany ahus-selbsthilfe.de
Francisco Monfort Asociación Síndrome Hemolítico Urémico Atípico (ASHUA) Spain ashua.es
Mireira Vicenta Carratalá RíosAsociación Síndrome Hemolítico Urémico Atípico (ASHUA) Spain ashua.es
Renée de WildtNVN Netherlandsnvn.nl
CAKUT & Ciliopathies Tess Harris PKD UK UK pkdcharity.org.uk
Autosomal dominant renal structural disorders Tess Harris PKD UK UK pkdcharity.org.uk
Flavia Galletti AIRP Italy renepolicistico.it
Uwe KorstBundesverband Niere e.V.GermanyBundesverband Niere e.V.
Karlheinz Steinecker AIRG FranceFrance airg-france.fr
Christian Scheidler ADTKDGermanyadtkd.de
Michel SchenkelAIRG BelgiumBelgiumairg-belgique.org
Metabolic nephropathies Claudia Sproedt Cystinose Selbsthilfe e.V. & Cystinosis Network EuropeGermany cystinose-selbsthilfe.de & cystinosis-europe.eu
Marjolein Bos Dutch and Flemish Cystinosis Group & Cystinosis Network EuropeNetherlands cystinose.nl & cystinosis-europe.eu
David van BennekomNetherlands
Pediatric CKD & Dialysis Claudia Sproedt Cystinose Selbsthilfe e.V. & Cystinosis Network EuropeGermany cystinose-selbsthilfe.de & cystinosis-europe.eu
Manuel Arellano ArmisenFederacion Nacional ALCER (FNA)Spainhttps://alcer.org
Pediatric Tx Evy van Kempen NVN Netherlands nvn.nl