In collaboration with the campaign founders, Children’s Liver Disease Foundation (CLDF), and ERN Rare Liver, ESPGHAN is bringing it's messages and goals to a European-wide audience.
ESPGHAN presented 4 calls to action for policy makers:
- Public awareness and education campaigns should be implemented to improve public understanding of childhood liver disease
- Utilising available funds and grants for rare disease initiatives, greater research should be commissioned to help drive the development of treatments for rare liver conditions
- Children with a liver disease must receive care in a specialist paediatric setting to ensure patients are diagnosed and treated in the most effective way
- Long-term and gradual transitional arrangements from paediatric to adult care must be improved to ensure patients receive the highest quality of care, with as little disruption possible
