Wilson disease: An ERN RARE-LIVER patient video
What can the ERN do for patients?
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.
Clinical exchange program – time for a review
The European Commission in cooperation with ECORYS, one of the oldest economic research and consulting companies in Europe, had launched a Clinical Exchange Program to share knowledge and stimulate collaborations between healthcare professionals within the ERNs.
Plasmapheresis Workshop, 22-23 November in Copenhagen
On 22 and 23 November, representatives from children’s hospitals in Spain, Germany, UK and Denmark met for a networking and working meeting at Rigshospitalet, where they jointly took the first step toward establishing a protocol for the treatment of children with acute liver failure in the five European centres involved.
Biliary Atresia Register planned for December 2022
Biliary Atresia (BA) is a rare liver disease of infancy with unclear etiology potentially leading to biliary cirrhosis and liver failure in early life. BA is still one of the main indications for paediatric liver transplantation. To meet this need, the prospective ERN RARE LIVER Biliary Atresia Registry (EBAR) was implemented in the up-and-running R-LIVER registry.