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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.

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
Johanna Rohlfing Nephie e.V./ Idiopathisches Nephrotisches Syndrom Germany nephie.de
Evy van Kempen NVN Netherlands nvn.nl
Tubulopathies 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 Lass aHus und MPNG Selbsthilfegruppe für komplementbedingte Erkrankungen Germany ahus-selbsthilfe.de
Francisco Monfort Asociación Síndrome Hemolítico Urémico Atípico (ASHUA) Spain ashua.es
CAKUT & Ciliopathies




Autosomal dominant renal structural disorders Tess Harris PKD UK UK pkdcharity.org.uk
Flavia Galetti AIRP Italy renepolicistico.it
Uwe Korst PKD Familiäre Zystennieren e.V. Germany pkdcure.de
Metabolic nephropathies Claudia Sproedt Cystinose Selbsthilfe e.V. Germany cystinose-selbsthilfe.de
Marjolein Bos Dutch and Flemish Cystinosis Group & Cystinosis Network Europe Netherlands cystinose.nl & cystinosis-europe.eu
Pediatric CKD & Dialysis Claudia Sproedt Cystinose Selbsthilfe e.V. Germany cystinose.nl
Pediatric Tx Evy van Kempen NVN Netherlands nvn.nl
Claudia Sproedt

Claudia Sproedt

ERN Board, Metabolic nephropathies, Paediatric CKD & Dialysis (Germany)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Daniel Renault

Daniel Renault

Hereditary glomerulopathies (France)

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
Antonio Cabrera Cantero

Antonio Cabrera Cantero

Tubulopathies (Spain)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
Susana Carvajal Arjona

Susana Carvajal Arjona

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 (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
Uwe Korst

Uwe Korst

Autosomal dominant renal structural disorders (Germany)

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
Evy van Kempen

Evy van Kempen

Immune glomerulopathies, Paediatric Tx (Netherlands)

ERKNet for Patients – The European Rare Kidney Disease Reference Network
© 2021 – ERKNet for Patients – The European Rare Kidney Disease Reference Network
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