Livmarli relieves itch in adolescents with Alagille syndrome: Analysis
Treatment with Livmarli (maralixibat) is effective for relieving itch in adolescents with Alagille syndrome, according to a new analysis of previous clinical trials.
Alagille syndrome
My son understands more about his Alagille doctor appointments
Every six months, we see our gastrointestinal (GI) team at the children’s hospital. We’re fortunate to have continued to see the same two providers we…
How I’m learning to cope with challenges as a rare disease parent
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…
IBAT inhibitors have potential to boost life quality for patients
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)…
Fielding my son’s new questions about his Alagille syndrome
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…
Screening for skull deformities necessary in some Alagille patients
Alagille syndrome may cause problems with skull development that can put abnormal pressure on the brain, and screening babies at risk for these rare…
New app designed to be health record, journal for patients
Know Rare, a support platform for people living with rare diseases such as Alagille syndrome, launched a health journaling app to help patients…
Everyday vigilance is part of raising a child with Alagille syndrome
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…
Our son with Alagille syndrome is finding it hard to fall asleep
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.
Vascular health checks, kidney tests urged for Alagille patients: Review
Kidney and blood vessel problems are common in people with Alagille syndrome, and while these often cause few to no symptoms, they can be…
