Quality of Life (QoL)
Leads
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Ewa Wunsch
- Quality of Life (QoL)
Pomeranian Medical University Hospital, Szczecin, Poland
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Maciej Janik
- Quality of Life (QoL)
Medical University of Warsaw Hospital, Poland
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Giulia Jannone
- Quality of Life (QoL)
Cliniques Universitaires Saint-Luc
Brussels, Belgium
About the Working Group
The Quality of Life (QoL) Working Group is a transversal ERN RARE-LIVER Working Group focused on health-related quality of life, patient-reported outcomes, treatment adherence, patient experience and psychosocial well-being across rare liver diseases.
Rare liver diseases can affect many areas of daily life, including fatigue, itching, pain, treatment burden, anxiety, depression, social participation, education, work, family life and the relationship between patients and healthcare professionals. These experiences may not always be fully captured by clinical markers alone.
The Working Group aims to support better measurement, understanding and improvement of quality of life in people living with rare liver diseases. It works across disease-specific Working Groups and brings together clinicians, mental health professionals, researchers, PROM/PREM experts, patient representatives and other stakeholders.
Get Involved
Clinicians, mental health professionals, researchers, PROM/PREM experts, patient representatives and patient organisations interested in quality of life in rare liver disease are welcome to become involved in the Working Group.
The group is especially open to motivated people with new ideas or those willing to actively contribute to projects.
Working Group interest form:
https://ec.europa.eu/eusurvey/runner/ERN_LIVER_WorkingGroups