Todas as informações sobre os nossos representantes ePAG

Grupo de trabalho Representante da ePAG Organização de Pacientes País Contacto

Website

Conselho ERN

Susana Carvajal Arjona

HipoFam

Espanha s.carvajal@hipofam.org

hipofam.org

 

Uwe Korst

Bundesverband Niere e.V.

Alemanha

korst@rare-kidney.de

bundesverband-niere.de

Hereditary glomerulopathies

Heidi Zealey

Alport UK

Reino Unido info@alportuk.org

alportuk.org

Immune glomerulopathies

Marieke van Meel

NephcEurope

Europa mvanmeel@casema.nl

nephceurope.eu

 

Johanna Rohlfing

Nephie e.V.

Alemanha nephieev@googlemail.com

nephie.de

Tubulopathies

Virginia Guillon

Gitelbart Association

França contact@gitelbart.fr

gitelbart.fr

 

Etienne Cosyns

AIRG Belgium

Bélgica etienne-cosyns@live.com

airg-belgique.org

 

Antonio Cabrera Cantero

HipoFam Espanha consultas@hipofam.org

hipofam.org

 

Susana Carvajal Arjona

HipoFam Espanha s.carvajal@hipofam.org

hipofam.org

Thrombotic mircoangiopathies

Christiane Mockenhaupt

MPGN und aHUS e.V. Alemanha

christiane.mockenhaupt[at]ahus-selbsthilfe.de

ahus-selbsthilfe.de

 

Francisco Monfort

ASHUA Espanha fmonfort@ashua.es

ashua.es

 

Mireira Vicenta Carratalá Ríos

ASHUA Espanha mcarratala@ashua.es

ashua.es

 

Renée de Wildt

NVN

Holanda dewildt@nvn.nl

nvn.nl

CAKUT & Ciliopathies

Tess Harris

PKD UK

Reino Unido

tess.harris@pkdcharity.org.uk

pkdcharity.org.uk

Autosomal dominant renal structural disorders

Tess Harris

PKD UK

Reino Unido tess.harris@pkdcharity.org.uk

pkdcharity.org.uk

 

Flavia Galletti

AIRP

Itália flaviag.airp@renepolicistico.it

renepolicistico.it

 

Uwe Korst

Bundesverband Niere e.V.

Alemanha korst@rare-kidney.de bundesverband-niere.de

 

Karlheinz Steinecker

AIRG France

França karlheinz.steinecker@nordnet.fr

airg-france.fr

 

Christian Scheidler

ADTKD

Alemanha Christian.Scheidler@outlook.de

adtkd.de

 

Michel Schenkel

AIRG Belgium

Bélgica michel.schenkel@skynet.be

airg-belgique.org

Metabolic nephropathies

Claudia Sproedt

Cystinose Selbsthilfe e.V. & Cystinosis Network Europe

Alemanha csproedt@leben-eben.com

cystinose-selbsthilfe.de

cystinosis-europe.eu

 

Marjolein Bos

Dutch and Flemish Cystinosis Group & Cystinosis Network Europe

Holanda marjoleinbos@ziggo.nl

cystinose.nl

cystinosis-europe.eu

 

David van Bennekom

-

Holanda davidvanbennekom@gmail.com

-

 

Tina Verschuere

-

Bélgica

 tverschuere@hotmail.com

-

Pediatric CKD & Dialysis

Claudia Sproedt

Cystinose Selbsthilfe e.V. & Cystinosis Network Europe

Alemanha csproedt@leben-eben.com

cystinose-selbsthilfe.de

cystinosis-europe.eu

 

Manuel Arellano Armisen

Federacion Nacional ALCER (FNA)

Espanha marellano@alcer.org

https://alcer.org