Alagille syndrome

Heading into the new year, one thing I’ve chosen to focus on is how I cope with challenges and obstacles in life. The last few…

Alagille syndrome comes with a high clinical, economic, and quality-of-life burden for patients and their families, but new treatments such as Livmarli (maralixibat)…

I knew the questions that would come from my son Finley one day. We’ve been slowly teaching him about his Alagille syndrome. At almost…

Alagille syndrome may cause problems with skull development that can put abnormal pressure on the brain, and screening babies at risk for these rare…

Know Rare, a support platform for people living with rare diseases such as Alagille syndrome, launched a health journaling app to help patients…

I’m fortunate that my son Finley, who was born with Alagille syndrome, has had relatively good health since his diagnosis and subsequent treatment. The…

Raising young children entails a variety of obstacles. For me, one of the most challenging is sleep regression, a temporary decline of a child’s sleep.

Kidney and blood vessel problems are common in people with Alagille syndrome, and while these often cause few to no symptoms, they can be…

Nearly 1.5 years of treatment with Bylvay (odevixibat) effectively reduces itching and liver damage markers, and improves growth and sleep in people with…

Nearly all parents know that their little kids are walking germ factories. Having our boys in day care and elementary school creates all kinds of…