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..
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.
Brochure „Lebererkrankungen bei Kindern: Alagille-Syndrom, Gallengangsatresie und PFIC
An explanatory film for children has been produced, additionally.
The group meets regularly in person.
The group's work is supported by Mirum Pharma Deutschland GmbH.