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ERKNet for Patients – The European Rare Kidney Disease Reference Network
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Evenimente și Întâlniri

Grupurile Europene de Sprijinire a Pacienților (GESP / EPAGs)

EURORDIS, o alianță a organizațiilor pacienților condusă de pacienți, a dezvoltat un Grup European de Sprijinire a Pacienților (GESP, ePAG – în limba engleză) pentru fiecare grup de boli aferent Rețelei Europene de Referință (RER).

Grupurile Europene de Sprijinire a Pacienților (GESP / ePAGs) vor aduce laolaltă susținători ai pacienților aleși și organizațiile afiliate care se vor asigura că vocile pacienților sunt auzite pe tot parcursul dezvoltării Rețelei Europene de Referință (RER).

Este important ca susținătorii pacienților și clinicienii să evolueze din punct de vedere al modului în care lucrează împreună în noul sistem al Rețelelor Europene de referință (RER).

Aflați mai multe despre EURORDIS făcând clic pe siglă.

Reprezentanții ePAG ai ERKNet

Grup de RețeleReprezentantul ePAGOrganizația PaciențilorȚaraContactSite web
Consiliul de ERN Susana Carvajal Arjona Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) Spania hipofam.org
Uwe KorstPKD Familiäre Zystennieren e.V.Germaniapkdcure.de
Glomerulopatii ereditare Heidi Zealey Alport UK Regatul Unit alportuk.org
Glomerulopatii imune Marieke van Meel NephcEuropeEuropa nephceurope.eu
Johanna RohlfingNephie e.V./ Idiopathisches Nephrotisches SyndromGermanianephie.de
Evy van Kempen NVN Țările de Jos nvn.nl
Tubulopatii Virginia Guillon Gitelbart AssociationFranța gitelbart.fr
Etienne CosynsAIRG BelgiumBelgiaairg-belgique.org
Antonio Cabrera Cantero Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) Spania hipofam.org
Susana Carvajal Arjona Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) Spania hipofam.org
Microangiopatii trombotice Alena LassaHus und MPNG Selbsthilfegruppe für komplementbedingte ErkrankungenGermaniaahus-selbsthilfe.de
Francisco Monfort Asociación Síndrome Hemolítico Urémico Atípico (ASHUA) Spania ashua.es
Anomalii Congenitale ale Rinichilor și ale Tractului Urinar (ACRTU) și Ciliopatii Tess Harris PKD UK Regatul Unit pkdcharity.org.uk
Tulburări structurale renale autosomal dominante Tess Harris PKD UK Regatul Unit pkdcharity.org.uk
Flavia Galletti AIRP Italia renepolicistico.it
Uwe KorstPKD Familiäre Zystennieren e.V.Germaniapkdcure.de
Karlheinz Steinecker AIRG FranceFranțaairg-france.fr
Nefropatii metabolice Claudia Sproedt Cystinose Selbsthilfe e.V. Germania cystinose-selbsthilfe.de
Marjolein Bos Dutch and Flemish Cystinosis Group & Cystinosis Network EuropeȚările de Jos cystinose.nl & cystinosis-europe.eu
Boala Renală Cronică (BRC) la pacienții Pediatrici și Dializa Claudia Sproedt Cystinose Selbsthilfe e.V. & Cystinosis Network Germania cystinose.nl
Manuel Arellano ArmisenFederacion Nacional ALCER (FNA)Spaniahttps://alcer.org
Tratament (Tx) Pediatric Evy van Kempen NVN Țările de Jos nvn.nl
Susana Carvajal Arjona

Susana Carvajal Arjona

Consiliul de ERN, Tubulopatii (Spania)

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

Uwe Korst

Consiliul de ERN, Tulburări structurale renale autosomal dominante (Germania)

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

Claudia Sproedt

Nefropatii metabolice, Boala Renală Cronică (BRC) la pacienții Pediatrici și Dializa (Germania)

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

Heidi Zealey

Glomerulopatii ereditare (Regatul Unit)

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

Marieke van Meel

Glomerulopatii imune (Europa)

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

Johanna Rohlfing

Glomerulopatii imune (Europa)

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

Virginia Guillon

Tubulopatii (Franța)

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

Etienne Cosyns

Tubulopatii (Belgia)

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

Antonio Cabrera Cantero

Tubulopatii (Spania)

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

Alena Lass

Microangiopatii trombotice (Germania)

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

Francisco Monfort

Microangiopatii trombotice (Spania)

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

Tess Harris

Tulburări structurale renale autosomal dominante, Anomalii Congenitale ale Rinichilor și ale Tractului Urinar (ACRTU) și Ciliopatii (Regatul Unit)

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

Flavia Galletti

Tulburări structurale renale autosomal dominante (Italia)

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

Karlheinz Steinecker

Tulburări structurale renale autosomal dominante (Franța)

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

Marjolein Bos

Nefropatii metabolice (Țările de Jos)

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

Manuel Arellano Armisen

Boala Renală Cronică (BRC) la pacienții Pediatrici și Dializa (Spania)

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

Evy van Kempen

Glomerulopatii imune, Tratament (Tx) Pediatric (Țările de Jos)

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