Your doctor remains your single point of contact if you are referred to an ERN centre and each country has specific rules and arrangements for the referral of patient cases to other specialists. Practically speaking, we can provide you with information on your disease or that of your child, help you find a specialist centre, and give you disease specific information. We hope you find our website interesting and informative.
News from the ERN RARE-LIVER Working Groups
What was going on in the various Working Groups of ERNRARE-LIVER in the last months?
At this year’s Members’ Meeting in Hamburg, most of the working groups gave a brief overview of their activities and what they had achieved in the past 12 months.
Biliary Atresia (BA) is a rare paediatric liver disease with an estimated prevalence of 1 / 14.000-21.000 births in Europe (~ 270 cases / year). Its aetiology is still unknown but recent studies favour an aetiology through microbe- or toxin-triggered immune dysregulation in liver and bile ducts leading to obliteration and fibrosis. [read more]
Substantial advances in the diagnosis, treatment, and long-term care of children presenting paediatric liver disease mean that survival into adulthood is now the expectation rather than the exception.