What is Alagille syndrome?

Alagille syndrome (ALGS) is a rare genetic condition. It mainly affects the liver, but can also affect other parts of the body, including the heart, kidneys, eyes, face, skeleton and blood vessels.

The information on this page is for:

Parents of children with Alagille syndrome or suspected Alagille syndrome.
Young people with Alagille syndrome.
Adults with Alagille syndrome.
Family, friends, carers, and healthcare professionals.

On this page:

What is Alagille syndrome?

Alagille syndrome (ALGS) is a rare genetic condition. It mainly affects the liver, but can also affect other parts of the body, including the heart, kidneys, eyes, face, skeleton and blood vessels.

Alagille syndrome happens in around 1 in 30,000 to 1 in 50,000 births. It is usually diagnosed early in life and affects boys and girls in equal numbers.

Some children have a mild form of the condition. They may have few symptoms or no symptoms at all. They may even reach adulthood without knowing they have the condition.

Other children have a more severe form and may be very unwell early in life. Sometimes the complications can even be life threatening.

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Useful links
Alagille syndrome
Causes
Diagnosis
Features of Alagille syndrome
Liver symptoms
Liver complications
Treatment
Alagille syndrome in adults

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This content was last reviewed: July 2026

Our expert reviewers:

We would like to thank everyone who helped with creating and reviewing this page. Including Professor Alistair Baker, Consultant Paediatric Hepatologist, King’s College and Lindsay Hogg, Principal Specialist Nurse, Birmingham Women’s and Children’s Hospital. And all our parent and family reviewers.

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Everyone’s experience of liver disease will be different. Always talk to your specialist medical team for personal advice.