The patient perspective

The patients are the core of the ERNs. Patients’ organisations are key partners and played an important role in the creation of the ERNs. They help to work towards better accessibility, clinical excellence and patient outcomes. We work with patient organizations all over Europe and welcome their perspective.

Patient organisations

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    Alpha1 Deutschland

    Germany

    Alpha-1-Antitrypsin Deficiency

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    ADAAT Alpha1-France

    France

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    AFL +

    France

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    ALBI Association Pour la Lutte Contre les Maladies Inflammatoires du foie et des Voies Biliaires

    France

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    Alpha-1 UK Support Group

    United Kingdom

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    AMFE

    France

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    AMMF

    United Kingdom

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    AMVF (Association des Malades des Vaisseaux du foie)

    France

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    Asociación Albi España

    Spain

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    Asociación Alfa 1 de España

    Spain

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    Association Bernard Pépin pour la Maladie de Wilson

    France

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    Associazione Nazionale Malattia di Wilson

    Italy

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    Children’s liver disease foundation

    United Kingdom

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    Deutsche Leberhilfe e.V.

    Germany

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    EURODIS

    EU

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    Finnish Kidney and Liver Association

    Finland

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    Hepatitis Hilfe Österreich

    Austria

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    Hepaturix - Associação Nacional das Crianças e Jovens Transplantados ou com doenças Hepáticas

    Portugal

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    HHT-Swiss

    Switzerland

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    Leverförbundet

    Sweden

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    Leverforeningen

    Denmark

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    Liver Patients International

    EU

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    LIVErNORTH

    United Kingdom

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    Morbus Wilson e.V.

    Germany

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    Nederlandse Leverpatienten Vereniging

    Netherlands

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    PBC Foundation

    United Kingdom

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    PKDCure

    Germany

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    Polycystic Kidney Disease Charity

    United Kingdom

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    PoznajPSC

    Poland

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    proLAR

    Norway

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    PSC Patients Europe

    EU

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    PSC Support

    United Kingdom

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    PSC Sverige

    Sweden

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    Raríssimas

    Portugal

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    Save Liver Association of Patients - SLAP

    North Macedonia

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    Stichting Alpha-1 Nederland

    Netherlands

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    Verein Leberkrankes Kind

    Germany

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    Vlaamse PBC & PSC-patiënten Vereniging vzw

    Belgium

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    Wilson's Disease Support Group - UK

    United Kingdom

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    Yael Stiftung

    Germany