Alagille Syndrome Program

Alagille syndrome is a rare genetic condition often discovered at birth or within a child’s first few years. Jaundice (yellow coloring of the whites of the eyes and skin) and/or a heart murmur are usually the first signs of this syndrome, which generally affects both the liver and the heart. It can also involve other parts of the body. Children with Alagille syndrome represent a spectrum of disease. Some have only mild disease and experience no symptoms, while others need lifesaving interventions. Symptoms can vary from one family member with Alagille syndrome to another.

Since Alagille syndrome is rare, affecting just one in 30,000 to 45,000 children born in the United States, its collective symptoms can be overlooked or misinterpreted. As a result, children might receive treatment for a single issue alone, such as a heart condition or a liver condition, without recognition of other important organ system involvement.

Our highly specialized Alagille Syndrome Program brings together world experts on pediatric Alagille syndrome, offering innovative and effective treatments for your child’s multiorgan needs. Physicians from our distinguished Betty Irene Moore Children’s Heart Center, including our world-renowned Pulmonary Artery Reconstruction (PAR) Program and our nationally recognized Pediatric Transplant Center and Neurosurgery program, among others, collaborate to provide the best possible care for children of all ages with with Alagille syndrome.

Our comprehensive, multidisciplinary team of Alagille syndrome experts diagnose, treat, and partner with your child’s doctors to manage Alagille syndrome throughout his or her lifetime.

Why Stanford Children’s Health for Alagille syndrome

We are known as the authority on Alagille syndrome for the western United States and the premier destination in North America for treating complex cardiac conditions common to Alagille syndrome, with the largest and most respected pulmonary artery reconstruction program in the world. In addition to being the top destination for complex heart surgeries, we are also home to leading world experts in liver transplantation, and neurosurgery being able to address all the needs patients with Alagille syndrome may have.

Stanford Children’s Health Alagille Syndrome Program highlights:

• Treatments for highly complex combined liver-heart needs. We specialize in multifaceted care (heart surgeries, liver transplants) for high-risk children, providing lifesaving and life-enhancing solutions to families where none existed before.
• Proven excellence through outcomes. Our pediatric heart surgery outcomes are second to none, and as a national liver transplant volume leader, we have the best patient survival rates in the country.
• Care informed by the latest research. We participate in the Global Alagille Alliance Study (GALA)—the international registry for people with Alagille syndrome—and lead the cardiovascular research program within it. Families may consent to being included in the GALA registry, helping contribute to the world’s collective knowledge on the syndrome. Participation in GALA, along with our own significant studies, puts us at the forefront of research and helps inform your child’s treatment.
• Convenient, family-centered care. We bring our team of experts together on a designated evaluation day to thoroughly review your child’s symptoms and conditions. Together, we determine the very best approach to care, with your family at the center.