Wilson Disease
Leads
-
Thomas Damgaard Sandahl MD, PhD
Consultant, Associate Professor
Department of Hepatology and Gastroenterology, Aarhus University Hospital, Denmark
HCP REPRESENTATIVE -
prof. dr hab. n. med. Piotr Socha
-
Wiebke Papenthin
- Liver Disease in Pregnancy
- Wilson Disease (WD)
Morbus Wilson e.V., Germany
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Eduardo Couchonnal-Bedoya
- Wilson Disease (WD)
Hospices Civils de Lyon, France
About the Working Group
The Wilson Disease Working Group brings together adult hepatologists, paediatric hepatologists, neurologists, researchers and patient representatives with expertise in Wilson Disease.
Wilson Disease is a rare inherited disorder of copper metabolism. It can affect the liver, brain and other organs, and requires lifelong diagnosis, monitoring and treatment. Because Wilson Disease affects both children and adults, the Working Group has an important role in supporting multidisciplinary and cross-age care across ERN RARE-LIVER.
The Working Group aims to improve diagnosis, clinical management, patient information, research collaboration, education and patient involvement across Europe.
Get Involved
Clinicians, researchers, neurologists, paediatric specialists, patient representatives and patient organisations interested in Wilson Disease are welcome to become involved in the Working Group.
The group works on patient pathways, registries, guideline implementation, surveys, CPMS activity, patient information and education.
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