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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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 UK Support Group
United Kingdom
Diseases covered:
Alpha-1-Antitrypsin Deficiency (A1ATD) -
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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AMMF - The Cholangiocarcinoma Charity
United Kingdom
Diseases covered:
Intrahepatic Cholangiocarcinoma (iCCA) -
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Asociación Alfa 1 de España
Spain
Diseases covered:
Alpha-1-Antitrypsin Deficiency (A1ATD) -
Association Bernard Pépin pour la Maladie de Wilson
France
Diseases covered:
Wilson's Disease -
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Berliner Leberring e.V.
Germany
Diseases covered:
- Autoimmune Hepatitis (AIH)
- Primary Biliary Cholangitis (PBC)
- Primary Sclerosing Cholangitis (PSC)
- Hepatic Porphyrias -
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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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Finnish Kidney and Liver Association
Finland
Diseases covered:
Liver and Kidney diseases in children -
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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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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LIVErNORTH
United Kingdom
Diseases covered:
Autoimmune Hepatitis (AIH)
Primary Biliary Cholangitis (PBC)
Primary Sclerosing Cholangitis (PSC) -
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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) -
Patiëntenvereniging Zeldzame Leverziekten
Belgium
Diseases covered:
Autoimmune Hepatitis (AIH)
Primary Biliary Cholangitis (PBC)
Primary Sclerosing Cholangitis (PSC) -
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PKD Charity/ Polycystic Kidney Disease Charity
United Kingdom
Rare Liver Diseases covered:
- Polycystic Liver Disease (PLD) -
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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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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) -
Stichting Alpha-1 Nederland
Netherlands
Diseases covered:
Alpha-1-Antitrypsin Deficiency (A1ATD) -
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