Meet the Members

Mission & Vision

We are a group of young people between the ages of 18 and 30 with rare liver diseases, united by our mission to empower young people to advocate for their unique needs and experiences, and to ensure that their voices are central to shaping healthcare practice.  

We focus on addressing the challenges of the transition from paediatric to adult care, highlighting the difficulties faced during this time and working with healthcare professionals to find solutions.

Our Values

EMPOWERMENT: We give young people with rare liver diseases a strong voice
COLLABORATION: We work closely with clinicians & experts, hospitals and other patient advocates
INCLUSION:  We advocate for all young people with rare liver diseases, regardless of background

Our Activities

• Since our foundation in 2023 in Ghent, we have been meeting monthly online to bring together young people with liver disease from different countries.
• The Youth Panel Members regulary attend conferences and ERN RARE-LIVER events to speak about our experiences being young and having a rare liver condition and raise
  awareness about that. These events provide opportunities to network with further individuals, professionals and networks.
• We work closely with the ERN Rare Disease and Transversal Working Groups. In these working groups, we meet clinicians on an equal footing and collaborate with them on projects, papers and new initiatives
• Here you can see some of our previous projects

Get Involved

What you need to join:

• A passion to represent the interests of young patients and work closely with the ERN RARE-LIVER
• Basic proficiency in English
• Availability to participate in regular online meetings and project activities