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

    Diseases covered:
    Alpha-1-Antitrypsin Deficiency (A1ATD)

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    ADAAT Alpha1-France

    France

    Diseases covered:
    Alpha-1-Antitrypsin Deficiency (A1ATD)

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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

    Diseases covered:
    Autoimmune Hepatitis (AIH)
    Low phospholipid associated cholelithiasis (LPAC)
    Primary Biliary Cholangitis (PBC)
    Primary Sclerosing Cholangitis (PSC)

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    Alpha-1 Plus asbl

    Belgium

    Diseases covered:
    Alpha-1-Antitrypsin Deficiency (A1ATD)

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    Alpha-1 UK Support Group

    United Kingdom

    Diseases covered:
    Alpha-1-Antitrypsin Deficiency (A1ATD)

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    AMAF Monza Onlus

    Italy

    Diseases covered:
    Autoimmune Hepatitis (AIH)
    Primary Biliary Cholangitis (PBC)
    Primary Sclerosing Cholangitis (PSC)
    IgG4-related hepatopathy; IgG4-related Sclerosing Cholangitis

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    AMFE

    France

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    AMMF - The Cholangiocarcinoma Charity

    United Kingdom

    Diseases covered:
    Intrahepatic Cholangiocarcinoma (iCCA)

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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

    Diseases covered:
    Alpha-1-Antitrypsin Deficiency (A1ATD)

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    Association Bernard Pépin pour la Maladie de Wilson

    France

    Diseases covered:
    Wilson's Disease

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    Associazione Nazionale Malattia di Wilson

    Italy

    Diseases covered:
    Wilson's Disease

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    Children’s liver disease foundation

    United Kingdom

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    Deutsche Leberhilfe e.V.

    Germany

    Rare Liver Diseases covered:
    - Autoimmune Hepatitis (AIH)
    - Hemochromatosis
    - Hepatitis E (HEV)
    - Primary Biliary Cholangitis (PBC)
    - Primary Sclerosing Cholangitis (PSC)
    - Rare liver tumours (HCC/CCC)
    - Wilson's disease

    - Liver Transplantation (LTX)

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    EURODIS

    EU

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    Finnish Kidney and Liver Association

    Finland

    Diseases covered:
    Liver and Kidney diseases in children

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    Hepatitis Hilfe Österreich - Plattform Gesunde Leber // hepatitis aid austria - platform healthy liver

    Austria

    Diseases covered:
    Acute Liver Failure (ALF)
    Alpha-1-Antitrypsin Deficiency (A1ATD)
    Autoimmune Hepatitis (AIH)
    Biliary Atresia (BA)
    Budd-Chiari-Syndrome (BCS)
    Congenital Bile acid synthesis defects
    Cystic fibrosis related liver disease
    Delta Hepatitis
    Hepatitis E
    IgG4-related hepatopathy; IgG4-related Sclerosing Cholangitis
    Intrahepatic Cholangiocarcinoma (iCCA); Other rare liver tumours (CCA/HCC, HEHE&HAS, HCC, Hepatoblastoma, NET)
    Porphyria
    Portal vein thrombosis
    Porto-sinusoidal vascular disease
    Primary Biliary Cholangitis (PBC)
    Primary Sclerosing Cholangitis (PSC)
    Sarcoidosis
    Wilson’s Disease

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    HHT-Swiss

    Switzerland

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    Leverforeningen

    Denmark

    Rare Liver Diseases covered:
    - Alpha-1-Antitrypsin Deficiency (A1ATD)
    - Autoimmune Hepatitis (AIH)
    - Rare liver tumours (CCA/HCC, HEHE&HAS, HCC, Hepatoblastoma, NET)
    - Primary Biliary Cholangitis (PBC)
    - Primary Sclerosing Cholangitis (PSC)
    - Rare forms of hemochromatosis (types 2-5, neonatal etc.)
    - Wilson’s Disease

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    Liver Patients International

    EU

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    LIVErNORTH

    United Kingdom

    Diseases covered:
    Autoimmune Hepatitis (AIH)
    Primary Biliary Cholangitis (PBC)
    Primary Sclerosing Cholangitis (PSC)

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    Morbus Wilson e.V.

    Germany

    Diseases covered:
    Wilson's Disease

  • NLV

    Nederlandse Leverpatienten Vereniging

    Netherlands

    Diseases covered:
    Acute Liver Failure (ALF)
    Alagille Syndrome
    Alpha-1-Antitrypsin Deficiency (A1ATD)
    Autoimmune Hepatitis (AIH)
    Benign recurrent intrahepatic cholestasis (BRIC)
    Biliary Atresia (BA)
    Budd-Chiari-Syndrome (BCS)
    Caroli disease
    Crigler-Najjar syndrome
    Hemochromatosis
    Hepatitis E
    Porphyria
    Primary Biliary Cholangitis (PBC)
    Primary Sclerosing Cholangitis (PSC)
    Progressive familial intrahepatic cholestasis (PFIC)
    Rare liver tumours
    Wilson’s Disease

    Liver Transplantation (LTX)

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    PBC Foundation

    United Kingdom

    Diseases covered:
    Primary Biliary Cholangitis (PBC)

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    PKD Charity/ Polycystic Kidney Disease Charity

    United Kingdom

    Rare Liver Diseases covered:
    - Polycystic Liver Disease (PLD)

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    PKDCure

    Germany

    Diseases covered:
    Polycystic Liver Disease (PLD)

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    PoznajPSC

    Poland

    Diseases covered:
    Primary Sclerosing Cholangitis (PSC)

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    proLAR

    Norway

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    PSC Support

    United Kingdom

    Diseases covered:
    Primary Sclerosing Cholangitis (PSC)
    IgG4-related Sclerosing Cholangitis
    Intrahepatic Cholangiocarcinoma (iCCA)

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    PSC Sverige

    Sweden

    Diseases covered:
    Primary Sclerosing Cholangitis (PSC)

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    Raríssimas

    Portugal

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    Save Liver Association of Patients - SLAP

    North Macedonia

    Rare Liver Diseases covered:
    - Acute Liver Failure (ALF)
    - Autoimmune Hepatitis (AIH)
    - Biliary Atresia (BA);
    - IgG4-related Sclerosing Cholangitis
    - Liver disease in pregnancy (ICP, HELLP syndrome, Acute fatty liver of pregnancy)
    - Neonatal Cholangitis
    - rare liver tumours (CCA/HCC, HEHE&HAS, HCC, Hepatoblastoma, NET)
    - Primary Biliary Cholangitis (PBC)
    - Primary Sclerosing Cholangitis (PSC)

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    Stichting Alpha-1 Nederland

    Netherlands

    Diseases covered:
    Alpha-1-Antitrypsin Deficiency (A1ATD)

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    Verein Leberkrankes Kind

    Germany

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    Vlaamse PBC&PSC-patiënten Vereniging vzw

    Belgium

    Diseases covered:
    Autoimmune Hepatitis (AIH)
    Primary Biliary Cholangitis (PBC)
    Primary Sclerosing Cholangitis (PSC)

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    Wilson's Disease Support Group - UK

    United Kingdom

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    Yael Stiftung

    Germany

    Diseases covered:
    Autoimmune Hepatitis (AIH)
    Primary Biliary Cholangitis (PBC)
    Primary Sclerosing Cholangitis (PSC)