In March 2023, the expert group was formed as part of a one-day workshop in Frankfurt.
The group includes parents of affected children, adolescent and adult patients as well as doctors and representatives of national and European specialist associations (GPGE, ESPHGAN, EASL) and the patient organisations Leberkrankes Kind e.V. and Billy Rubin e.V..
In 2023/2024, the group has produced an information brochure for parents and everyday contact points such as schools, kindergartens and doctors (e.g. general practitioners, dentists, dermatologists, gynaecologists) and a programme to support the transition.
In 2024/2025, a “guide through the health care jungle” was developed collaboratively and implemented as an interactive online brochure.
In 2026, the topic of transition was once again highlighted as a key focus.
Special publications titled "Pediatric Cholestatic Liver Diseases – Prerequisites for a Successful Transition of Affected Patients to Adult Care" During a workshop at Springer Medizin Verlag in Berlin, representatives from pediatric and adult hepatology, along with the patient organization Leberkrankes Kind e.V., outlined the services and goals that should be part of the transition process. This resulted in a set of recommendations for action for physicians and patients (parents, children, and adolescents), which were published in the journals Die Gastroenterologie and Monatszeitschrift für Kinderheilkunde.
Additionally, the topic was addressed in an animation video for adolescents.
Max and Mia—two teenagers aged approximately 14 and 16—know each other from the clinic, and their parents are also acquainted. Max underwent a liver transplant as an infant/toddler, while Mia has been living with a cholestatic liver disease for years. We follow Max and Mia on a clinic visit that involves no medical examinations; instead, they are attending a "Transition Day"—an information event for chronically ill children and their parents...
The group meets regularly in person.
The group's work is supported by Mirum Pharma Deutschland GmbH.