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There are many ways you can help children and their families get the care they need.
Alagille syndrome is a genetic disorder of your child’s liver and other organs that causes reduced bile flow because of too few bile ducts inside the liver.
The syndrome is usually diagnosed during infancy or early childhood.
Children who have Alagille syndrome have progressive destruction of the bile ducts inside and occasionally outside of the liver, causing bile to back up and cause scarring in the liver.
It’s distinguishable from other liver diseases because it usually affects other major systems in the body, including the cardiovascular system, the bones of the spine, eyes and kidneys.
In addition, children with Alagille syndrome tend to have unique facial characteristics, with a pointy chin, broad brow and widely spaced eyes.
Hope and compassionate care
Hearing that your child has Alagille syndrome can be scary. The physicians at Boston Children’s Hospital will work with you to keep your child as healthy as possible. Sometimes it can be helpful to talk to other parents who have children with the same condition. The Alagille Syndrome Alliance can be an important resource for parents of children with this condition.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”