The following links provide information that can help doctors and parents involved: :
- ORPHA.NET : The portal for rare and orphan diseases
- Information on genetic medicine :
- AEMO.CH : Childhood and Orphan Diseases Association (Association Enfance et Maladies orphelines - Switzerland)
- ESPGHAN.ORG : European Society for paediatric gastroenterology, hepatology and nutrition
- FILFOIE.COM : Filière de Santé Maladies Rares du Foie de l'Adulte et de l'Enfant (France)
- IRCPSS : International registry of congenital porto-systemic shunts
- AMVF : Association des malades des vaisseaux du foie (France)
- EVLK : Association of Parents of Children with Liver Disease - Association des parents d'enfants malades du foie (Switzerland)
- AMFE : Association of Pediatric Liver Disease - Association Maladies Foie Enfant (France)
- Mahana 4 Kids : Fund to help children with liver disease and their families - Fonds d’aide en faveur des enfants malades du foie et de leur famille (Switzerland)
- Swisstransplant : Swisstransplant is the national body responsible for organ donation
- PFIC : About PFIC Network (Progressive Familial Intrahepatic Cholestasis)
- Hypnosis in Pediatrics : Hypnosis explained to children