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ERKNet for Patients – The European Rare Kidney Disease Reference Network
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European Reference Networks

Bizi Twitter’da takip edin

Link to: Patient Journey
Hasta Hikayesi
Link to: Patient Organisations
Hasta Organizasyonları
Link to: Patient Communities
Çevrimiçi Topluluklar
Link to: Research
Araştırma
Link to: Events & Meetings
Etkinlikler & Toplantılar

Avrupa Hasta Savunma Grupları (ePAG’ler)

Hasta kuruluşlarının hasta odaklı birliği halinde bir sivil toplum kuruluşu olan EURORDIS, her bir ERN hasta grubu için bir Avrupa Hasta Savunma Grubu (ePAG) geliştirmiştir.

ePAG grupları, seçilmiş olan hasta temsilcileri ile bağlı kuruluşları bir araya getirerek, ERN geliştirme süreçleri boyunca, hastaların seslerinin duyulacağından emin olacaklardır.

Hasta temsilcileri ile klinik tedavi uzmanlarının, yeni ERN sistemleri içerisinde bir arada çalışma yöntemlerini geliştirme şekilleri önemlidir.

Logoya tıklayarak EURORDIS hakkında daha fazla bilgi edinebilirsiniz.

ERKNet’in ePAG temsilcileri

Ağ GrubuePAG TemsilcisiHasta OrganizasyonuÜlkeİletişimİnternet Sitesi
ERN Kurulu Susana Carvajal Arjona Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) İspanya hipofam.org
Uwe KorstPKD Familiäre Zystennieren e.V.Almanya pkdcure.de
Kalıtsal glomerülopatiler Heidi Zealey Alport UK Birleşik Krallık alportuk.org
Bağışıklık glomerülopatileri Marieke van Meel NephcEuropeAvrupa nephceurope.eu
Johanna RohlfingNephie e.V./ Idiopathisches Nephrotisches SyndromAlmanya nephie.de
Evy van Kempen NVN Hollanda nvn.nl
Tübülopatiler Virginia Guillon Gitelbart AssociationFransa gitelbart.fr
Etienne CosynsAIRG BelgiumBelçika airg-belgique.org
Antonio Cabrera Cantero Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) İspanya hipofam.org
Susana Carvajal Arjona Asociación para la información y la investigación de la Hipomagnesemia Familiar (HipoFam) İspanya hipofam.org
Trombotik mirkoanjiyopatiler Alena LassaHus und MPNG Selbsthilfegruppe für komplementbedingte ErkrankungenAlmanya ahus-selbsthilfe.de
Francisco Monfort Asociación Síndrome Hemolítico Urémico Atípico (ASHUA) İspanya ashua.es
CAKUT & Siliyopatiler Tess Harris PKD UK Birleşik Krallık pkdcharity.org.uk
Otozomal dominant renal yapısal bozukluklar Tess Harris PKD UK Birleşik Krallık pkdcharity.org.uk
Flavia Galletti AIRP İtalya renepolicistico.it
Uwe KorstPKD Familiäre Zystennieren e.V.Almanya pkdcure.de
Karlheinz Steinecker AIRG FranceFransa airg-france.fr
Metabolik nefropatiler Claudia Sproedt Cystinose Selbsthilfe e.V. Almanya cystinose-selbsthilfe.de
Marjolein Bos Dutch and Flemish Cystinosis Group & Cystinosis Network EuropeHollanda cystinose.nl & cystinosis-europe.eu
Pediatrik CKD & Dializ Claudia Sproedt Cystinose Selbsthilfe e.V. & Cystinosis Network Almanya cystinose.nl
Manuel Arellano ArmisenFederacion Nacional ALCER (FNA)İspanya https://alcer.org
Pediatrik Tx Evy van Kempen NVN Hollanda nvn.nl
Susana Carvajal Arjona

Susana Carvajal Arjona

ERN Kurulu, Tübülopatiler (İspanya)

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

Uwe Korst

ERN Kurulu, Otozomal dominant renal yapısal bozukluklar (Almanya)

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

Claudia Sproedt

Metabolik nefropatiler, Pediatrik CKD & Dializ (Almanya)

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

Heidi Zealey

Kalıtsal glomerülopatiler (Birleşik Krallık)

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

Marieke van Meel

Bağışıklık glomerülopatileri (Avrupa)

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

Johanna Rohlfing

Bağışıklık glomerülopatileri (Avrupa)

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

Virginia Guillon

Tübülopatiler (Fransa)

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

Etienne Cosyns

Tübülopatiler (Belçika)

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

Antonio Cabrera Cantero

Tübülopatiler (İspanya)

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

Alena Lass

Trombotik mirkoanjiyopatiler (Almanya)

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

Francisco Monfort

Trombotik mirkoanjiyopatiler (İspanya)

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

Tess Harris

Otozomal dominant renal yapısal bozukluklar, CAKUT & Siliyopatiler (Birleşik Krallık)

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

Flavia Galletti

Otozomal dominant renal yapısal bozukluklar (İtalya)

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

Karlheinz Steinecker

Otozomal dominant renal yapısal bozukluklar (Fransa)

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

Marjolein Bos

Metabolik nefropatiler (Hollanda)

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

Manuel Arellano Armisen

Pediatrik CKD & Dializ (İspanya)

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

Evy van Kempen

Bağışıklık glomerülopatileri, Pediatrik Tx (Hollanda)

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