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…
Alagille syndrome
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…
Bylvay eases itch over long term in PFIC, Alagille syndrome patients
Nearly 1.5 years of treatment with Bylvay (odevixibat) effectively reduces itching and liver damage markers, and improves growth and sleep in people with…
How we navigate our son’s response to cold and flu season
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…
Case study highlights challenges to diagnosis of Alagille syndrome
A diagnosis of Alagille syndrome can be challenging, particularly in areas that lack access to genetic testing and specialized imaging, a case report from…
How we’re navigating day-to-day life with a liver disease
Raising children means daily challenges. One day they’re the sweetest kids in the world; the next, you wonder how someone so small could bring forth…
Software helps ID hard-to-interpret Alagille-causing gene mutations
Software tools may help predict whether certain hard-to-interpret mutations in the JAG1 gene affect splicing, a process that can direct how a protein is produced,…
It’s hard explaining my son’s Alagille syndrome diagnosis to strangers
Before my son Finley was born, I had minimal exposure to the rare disease world. I knew about the more publicized conditions and had participated…
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