Polycystic Liver Disease

About the Working Group

The Polycystic Liver Disease (PLD) Working Group brings together clinicians, researchers and patient representatives with expertise in polycystic liver disease and related cystic liver disorders.

Polycystic liver disease is a rare genetic condition in which multiple fluid-filled cysts develop in the liver. It may occur as isolated autosomal dominant polycystic liver disease (ADPLD), or as part of autosomal dominant polycystic kidney disease (ADPKD). While many people with PLD have few or no symptoms, progressive liver enlargement can lead to pain, abdominal fullness, early satiety, nausea, reduced mobility, shortness of breath, fatigue and reduced quality of life.

The Working Group aims to improve clinical management, patient information, patient pathways, education and research collaboration across Europe.

Get Involved

Clinicians, researchers, patient representatives and patient organisations interested in Polycystic Liver Disease are welcome to become involved in the Working Group.

The group works on patient information, clinical guidance, pathways, education and collaborative projects to improve care for people living with PLD across Europe.

For more information or to join the Working Group, please contact the ERN RARE-LIVER Coordination Office.

Working Group interest form:
https://ec.europa.eu/eusurvey/runner/ERN_LIVER_WorkingGroups