One of the biggest challenges in healthcare of patients with rare liver diseases is the rarity of expertise in these diseases among healthcare professionals. The integration of specialist nurses into the care pathway is important to increase the quality of care for patients with rare liver diseases. The aim of the European Reference Network on hepatological diseases (ERN RARE-LIVER) is to train specialist nurses employed by ERN Full Members and Affiliated Partners in the specialist care and particular needs of patients with rare liver disease.
Nurses Working Group Leads
Royal Free London NHS Foundation Trust, Hepatology CNS, UK
Liver Care Nursing Austria, AKH Wien, Austria
Neus Llarch Alfonso
BCLC – Hepatic Oncology Unit – Hospital Clínic, Barcelona, Spain
Liver Care Nursing Austria, Ordensklinikum Linz GmbH, Barmherzige Schwestern, Austria
Nurses Working Group
Topics that we are dealing with:
- Education on rare liver diseases and other aspects
- Development of care standards and education for patients with rare liver diseases
- Exchange about best practice for the use of databases
- Exchange about the transition process (from paediatric to adult care)
- Travelling to another centre for training and exchange
All nurses in ERN and non-ERN centres are welcome to join the group. Please contact the ERN office and fill in this survey.
Upcoming Nurses Webinar: 21 September 2022, 17:00 (CEST)
Our nurses team at ERN RARE-LIVER is preparing a webinar aimed at fellow nurses, including presentations and a discussion round.
Nurses Webinar: 23 February 2022, 20:00-21:00 (CET)
Topic:Training program for Patients with Rare Liver Diseases – Dos & Don’ts Our nurses team at ERN RARE-LIVER is preparing a webinar aimed at fellow
Gastrointestinal Nursing, Vol. 19, No. Sup4: Diagnosis, assessment and management of PBC
Primary biliary cholangitis: assessment and management strategies
S Nadir Abbas, David Jones, Yiannis Kallis, Laura Maher, Imran Patanwala
Published Online:11 May 2021
Access publication here