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: 
Genomic consultation
General informations

AEMO.CH

Childhood and Orphan Diseases Association (Association Enfance et Maladies orphelines)

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 (Paris, France)

IRCPSS

International registry of congenital porto-systemic shunts

AMVF

Association des malades des vaisseaux du foie

EVLK

Association of Parents of Children with Liver Disease - Association des parents d'enfants malades du foie

AMFE

Association of Pediatric Liver Disease - Association Maladies Foie Enfant (AMFE)

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.

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