Frequently Asked Questions

R-Liver is the prospective registry of ERN RARE-LIVER, which currently focuses on autoimmune liver diseases AIH, PBC, PSC and polycystic liver disease. Other registries will become ERN RARE-LIVER registries in the future, either as separate registries or incorporated into R-LIVER.

Focus areas: 

ERN RARE-LIVER concentrates on several types of rare liver diseases:

Autoimmune Liver Diseases (AILD): These are conditions where the body's immune system mistakenly attacks healthy liver tissue. 

Metabolic, Biliary Atresia, and Related Diseases: This category includes disorders affecting liver metabolism, as well as congenital conditions like biliary atresia, where bile ducts are absent or blocked. 

Structural Liver Diseases: These encompass a range of abnormalities affecting the structure of the liver, such as cysts, tumors, and vascular malformations. 

Rare Liver Diseases in Pregnancy: Conditions that affect the liver during pregnancy, which may require specialised management due to the unique physiological changes occurring during this time.

Your doctor remains your single point of contact and can refer you to a specialist centre. Please note that each country has specific rules and arrangements for the referral of patient cases to other specialists, and notably to ERNs. For the list of centres click "here":/patients/understand-your-diagnosis/