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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.
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.
Noelle Ebel, MDDirector, Pediatric Hepatology
Jeff Feinstein, MDCo-director, Pediatric Cardiology
Amy Gallo, MDCo-director, Pediatric Abdominal Transplant Surgery
Frank Hanley, MDPediatric Cardiothoracic Surgery
Michael Ma, MDPediatric Cardiothoracic Surgery
Elisabeth Martin, MD, MPHPediatric Cardiothoracic Surgery
Doff McElhinney, MDPediatric Cardiology
Ritu Asija, MDPediatric Cardiology
Jennifer Shek, NPPediatric Cardiology
Michelle Ogawa, CPNPPediatric Cardiology
Danielle LeckyProgram Coordinator
Carlos Esquivel, MDChief, Division of Transplantation
C. Andrew Bonham, MDPediatric Abdominal Transplant Surgery
Cynthia Wong, MDPediatric Nephrology
Gary Steinberg, MDLacroute-Hearst Professor & Chairman, Pediatric Neurosurgery
William Gallentine, DOPediatric Neurology
Sarah Lee, MDPediatric Neurology
Maura Ruzhnikov, MDPediatric Neurology
Dena Matalon, MDPediatric Genetics
Laura Bachrach, MDPediatric Endocrinology
Monica Grover, MBBSPediatric Endocrinology
Ann Shue, MDPediatric Ophthalmology
© 2021 Stanford Children's Health