Alagille syndrome

Featured resources

Alagille syndrome overview: What you need to know

a doctor with a model of a liver above his outstretched hands

Alagille syndrome is a genetic disease that can cause a wide range of symptoms, typically including liver problems as well as heart issues and characteristic changes in the shape of the face.

Alagille syndrome treatment and management options

A variety of different pills and capsules of varying sizes and colors

A range of treatment options, including medications and surgical procedures, are available for managing Alagille syndrome symptoms and improving quality of life for patients

Latest news & perspectives

Discussion

ALAGILLE SYNDROME

Columns

Creating the resource I needed after my son’s Alagille syndrome diagnosis

It’s hard to believe that it’s been almost six years since my youngest son, Finley, was born with Alagille syndrome. I can mentally transport…

Discussion

Columns

Changing backpacks is the right fit for my son with Alagille syndrome

My wife, Dani, and I have been working to help our son Finley navigate kindergarten, which he just started six weeks ago. It hasn’t been…

Discussion

ALAGILLE SYNDROME

Columns

After being defensive about my son and sports, he’s now playing defense

After my son Finley was diagnosed with Alagille syndrome, a number of “what if” questions lingered in the back of my mind. What would…

Editorial team

Expert PhD science editors, writers, and journalists dedicated to credible reporting.

Marta Figueiredo, PhD

Patricia Silva, PhD

Ines Martins, PhD

Meet our team

Through his column, Jay Sandstrom, whose son lives with Alagille syndrome, hopes to show that while being a caregiver for a child with a rare disease comes with its challenges, it also brings opportunities for celebration.

More about Jay