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ERKNet for Patients – The European Rare Kidney Disease Reference Network
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Link to: Patient Journey
PATIENT JOURNEY
Link to: Patient Organisations
PATIENT ORGANISATIONS
Link to: Patient Communities
PATIENT COMMUNITIES
Link to: Research
RESEARCH
Link to: Events & Meetings
EVENTS & MEETINGS

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.

ERKNet European Patients Advocacy Group (ePAG) Terms of Reference (ToR) – PDF document (ver.: 09.06.2021)

Meet ERKNet’s 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 KorstPKD Familiäre Zystennieren e.V.Germanypkdcure.de
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 Galetti AIRP Italy renepolicistico.it
Uwe KorstPKD Familiäre Zystennieren e.V.Germanypkdcure.de
Karlheinz Steinecker AIRG FranceFrance airg-france.fr
Christian Scheidler ADTKDGermanyadtkd.de
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
Susana Carvajal Arjona

Susana Carvajal Arjona

ERN Board, Tubulopathies (Spain)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Uwe Korst

Uwe Korst

ERN Board, Autosomal dominant renal structural disorders (Germany)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Claudia Sproedt

Claudia Sproedt

Metabolic nephropathies, Paediatric CKD & Dialysis (Germany)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Heidi Zealey

Heidi Zealey

Hereditary glomerulopathies (UK)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Marieke van Meel

Marieke van Meel

Immune glomerulopathies (Europe)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Johanna Rohlfing

Johanna Rohlfing

Immune glomerulopathies (Europe)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Virginia Guillon

Virginia Guillon

Tubulopathies (France)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Etienne Cosyns

Etienne Cosyns

Tubulopathies (Belgium)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Antonio Cabrera Cantero

Antonio Cabrera Cantero

Tubulopathies (Spain)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Alena Lass

Alena Lass

Thrombotic mircoangiopathies (Germany)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Francisco Monfort

Francisco Monfort

Thrombotic mircoangiopathies (Spain)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Tess Harris

Tess Harris

Autosomal dominant renal structural disorders, CAKUT & Ciliopathies (UK)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Flavia Galetti

Flavia Galetti

Autosomal dominant renal structural disorders (Italy)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Karlheinz Steinecker

Karlheinz Steinecker

Autosomal dominant renal structural disorders (France)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Marjolein Bos

Marjolein Bos

Metabolic nephropathies (Netherlands)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Manuel Arellano Armisen

Manuel Arellano Armisen

Paediatric CKD & Dialysis (Spain)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Evy van Kempen

Evy van Kempen

Immune glomerulopathies, Paediatric Tx (Netherlands)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
David van Bennekom

David van Bennekom

Metabolic nephropathies (Netherlands)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Christian Scheidler

Christian Scheidler

AD structural disorders (Germany)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Mireira Vicenta Carratalá Ríos

Mireira Vicenta Carratalá Ríos

Trombotic microangiopathies (Spain)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Renée de Wildt

Renée de Wildt

Trombotic microangiopathies (Netherlands)

ERKNet for Patients – The European Rare Kidney Disease Reference Network

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