How do I find a center of excellence in Alagille syndrome?
The Children’s Hospital of Philadelpphia (CHOP) has an Alagille Syndrome Clinical Care Program dedicated to treating children with Alagille syndrome. This program allows children to see all the specialists they need in one visit. The program also has a strong focus on research into Alagille syndrome.
If Philadelphia is too far for you, contact your local children’s hospital to see if they have recommendations for doctors familiar with Alagille syndrome. The liver center at your local children’s hospital is a good place to start!
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What kind of doctors do I need to see if I have Alagille syndrome?
People with Alagille syndrome typically see many doctors who are experts in different body systems, including:
- Gastroenterologist (expert in the digestive system and liver)
- Cardiologist (expert in the heart)
- Ophthalmologist (expert in the eyes)
- Nephrologist (expert in the kidneys)
- Orthopedist (expert in bones)
- Geneticist (expert in genetics)
- Alagille Syndrome. GeneReviews. https://www.ncbi.nlm.nih.gov/books/NBK1273/
If I have Alagille syndrome, what should my doctor know about managing the disease?
Your doctor should be familiar with the specialists you need to see (e.g. gastroenterologist, cardiologist, nephrologist, etc.). They should also help you maintain a healthy diet to help you continue to grow and develop properly.
- Alagille syndrome. American Liver Foundation. https://liverfoundation.org/for-patients/about-the-liver/diseases-of-the-liver/alagille-syndrome/#information-for-the-newly-diagnosed