Alagille syndrome

Being thrust into the world of rare diseases has been interesting. If you don’t have a personal connection to rare diseases, it’s easy to feel…

Lately, I’ve found it easier to settle into the flow of daily life than in previous years. Routines have developed, and the weekly rhythms now…

A baby girl with Alagille syndrome and related liver problems that were not responding to standard medication was also diagnosed with a rare liver…

Now that my son Finley is 5, I’ve been reflecting a lot. That’s why so many of my recent columns have focused on the milestones…

While my “Be Rare with Finn” column focuses on my youngest son, Finley, and his journey with Alagille syndrome, Finley is not my only…

Children with Alagille syndrome who have lower blood levels of bile acids, the main component of the digestive fluid bile, have better long-term liver…

Everyone always says that time flies when you are raising kids. Many have told me that one day, you blink, and they’ve gone from crawling…

Raising my son Finley, who was born with Alagille syndrome, has taught me to adapt to countless challenges, including new medications, unfamiliar terminology, and…

Livmarli (maralixibat) successfully cleared rare, debilitating fatty skin growths and eased chronic itching in two young boys with Alagille syndrome in the U.S., according…

One of the greatest joys of watching our son Finley grow up has been witnessing his growing appreciation for milestones and special occasions. Most recently,…