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ERKNet for Patients – The European Rare Kidney Disease Reference Network
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Link to: Patient Communities
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Dogodki in srečanja

Evropske skupine za bolnikove pravice (ePAGs)

EURORDIS, nevladna zveza organizacij  bolnikov, ki jo vodijo bolniki, je za vsako skupino bolezni ERN razvila evropsko skupino za bolnikove pravice (ePAG).

ePAG bodo združevali izvoljene zagovornike bolnikov in povezane organizacije, ki bodo zagotavljale, da se bo bolnikov glas slišal v celotnem procesu razvoja ERN.

Pomembno je, da zagovorniki bolnikov in zdravniki razvijajo način medsebojnega sodelovanja v novem sistemu ERN.

Poizvedite več o EURORDIS-u s klikom na logotip

Predstavniki ERKNet-a ePAG

Skupina omrežijePAG predstavnikOrganizacija bolnikovDržavaKontaktSpletna stran
ERN uprava Susana Carvajal Arjona Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) Španija hipofam.org
Uwe KorstPKD Familiäre Zystennieren e.V.Nemčijapkdcure.de
Dedne glomerulopatije Heidi Zealey Alport UK Združeno kraljestvo alportuk.org
Imunske glomerulopatije Marieke van Meel NephcEuropeEvrope nephceurope.eu
Johanna RohlfingNephie e.V./ Idiopathisches Nephrotisches SyndromNemčijanephie.de
Evy van Kempen NVN Nizozemska nvn.nl
Tubulopatije Virginia Guillon Gitelbart AssociationFrancija gitelbart.fr
Etienne CosynsAIRG BelgiumBelgija airg-belgique.org
Antonio Cabrera Cantero Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) Španija hipofam.org
Susana Carvajal Arjona Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) Španija hipofam.org
Trombotične mikroangiopatije Alena LassaHus und MPNG Selbsthilfegruppe für komplementbedingte ErkrankungenNemčija ahus-selbsthilfe.de
Francisco Monfort Asociación Síndrome Hemolítico Urémico Atípico (ASHUA) Španija ashua.es
Prirojene napake sečil in ciliopatije Tess Harris PKD UK Združeno kraljestvo pkdcharity.org.uk
Avtosomne dominantne ledvične strukturne motnje Tess Harris PKD UK Združeno kraljestvo pkdcharity.org.uk
Flavia Galletti AIRP Italija renepolicistico.it
Uwe KorstPKD Familiäre Zystennieren e.V.Nemčijapkdcure.de
Karlheinz Steinecker AIRG FranceFrancija airg-france.fr
Metabolne nefropatije Claudia Sproedt Cystinose Selbsthilfe e.V. Nemčija cystinose-selbsthilfe.de
Marjolein Bos Dutch and Flemish Cystinosis Group & Cystinosis Network EuropeNizozemska cystinose.nl & cystinosis-europe.eu
Pediatrična kronična ledvična bolezen in dializa Claudia Sproedt Cystinose Selbsthilfe e.V. & Cystinosis Network Nemčija cystinose.nl
Manuel Arellano ArmisenFederacion Nacional ALCER (FNA)Španija https://alcer.org
Pediatrična transplantacija Evy van Kempen NVN Nizozemska nvn.nl
Susana Carvajal Arjona

Susana Carvajal Arjona

ERN uprava, Tubulopatije (Španija)

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

Uwe Korst

ERN uprava, Avtosomne dominantne ledvične strukturne motnje (Nemčija)

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

Claudia Sproedt

Metabolne nefropatije, Pediatrična kronična ledvična bolezen in dializa (Nemčija)

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

Heidi Zealey

Dedne glomerulopatije (Združeno kraljestvo)

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

Marieke van Meel

Imunske glomerulopatije (Evrope)

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

Johanna Rohlfing

Imunske glomerulopatije (Nemčija)

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

Virginia Guillon

Tubulopatije (Francija)

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

Etienne Cosyns

Tubulopatije (Belgija)

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

Antonio Cabrera Cantero

Tubulopatije (Španija)

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

Alena Lass

Trombotične mikroangiopatije (Nemčija)

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

Francisco Monfort

Trombotične mikroangiopatije (Španija)

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

Tess Harris

Avtosomne dominantne ledvične strukturne motnje, Prirojene napake sečil in ciliopatije (Združeno kraljestvo)

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

Flavia Galletti

Avtosomne dominantne ledvične strukturne motnje (Italija)

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

Karlheinz Steinecker

Avtosomne dominantne ledvične strukturne motnje (Italija)

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

Marjolein Bos

Metabolne nefropatije (Nizozemska)

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

Manuel Arellano Armisen

Pediatrična kronična ledvična bolezen in dializa (Španija)

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

Evy van Kempen

Imunske glomerulopatije, Pediatrična transplantacija (Nizozemska)

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