Before having our son Finley, our exposure to the rare disease world was limited. Most people we’ve encountered since receiving his diagnosis have had the…
Alagille syndrome
ALAGILLE SYNDROME
ColumnsWhy making time for doctor appointments is challenging
For me, one of the most dreaded parts of being the parent of a child with a rare genetic disorder is getting lab work done.
ALAGILLE SYNDROME
NewsBylvay eases itch, signs of liver damage in Alagille, trial data show
Daily treatment with Bylvay (odevixibat) safely and effectively eases itching and lowers blood bile acid levels, a sign of liver damage, in children and adolescents…
ALAGILLE SYNDROME
ColumnsThe complexities of parenting siblings of a chronically ill child
One thing I aim to do by writing this column is to bring some focus to what life looks like when raising a child…
ALAGILLE SYNDROME
ColumnsThe unique challenges of traveling with children who have liver disease
Traveling with small children is challenging. While the destinations that are visited and the memories that are created are worth it, getting there entails a…
ALAGILLE SYNDROME
NewsWorld Liver Day to raise awareness of Alagille, other liver diseases
April 19 is a day set aside to raise awareness of liver diseases such as Alagille syndrome. It’s World Liver Day, a global…
ALAGILLE SYNDROME
ColumnsShoe shopping for a child with Alagille was surprisingly difficult
I love shoes. Shoe collecting has been a hobby of mine for quite some time. A good pair of sneakers or boots can take your…
ALAGILLE SYNDROME
ColumnsOur son’s smaller size from Alagille syndrome creates obstacles
There are several words I’d use to describe my 3-year-old son, Finley. My wife, Dani, started a tradition for our two boys where each night…
ALAGILLE SYNDROME
NewsPruritus treatment Livmarli should be reimbursable: Canadian panel
A Canadian Agency for Drugs and Technologies in Health (CADTH) committee has recommended that Livmarli (maralixibat) be covered by the country’s publicly funded health…
ALAGILLE SYNDROME
ColumnsHearing the haunting words ‘failure to thrive’ to describe your baby
Feeding your newborn child can be stressful. There are so few things they can control in their young lives. It’s common for children to learn…
Recent Posts
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- Blood bile acids predict liver outcomes in Alagille syndrome children: Study
- New hepatitis E treatment more potent than available drugs: Lab study
- New PBC therapy found to reduce liver scarring after 1 year in US trial