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.
The group meets regularly in person.
The group's work is supported by Mirum Pharma Deutschland GmbH.