When you’re raising a child with a rare disease like Alagille syndrome, you become very familiar with their care team. My 5-year-old son, Finley,…
Alagille syndrome
ALAGILLE SYNDROME
NewsCanada approves Livmarli oral tablets for Alagille itching
An oral tablet formulation of Livmarli (maralixibat) is now approved in Canada to treat pruritus (itching) caused by Alagille syndrome. An oral solution…
LIVER DISEASE
NewsEarly detection highlighted in this year’s Rare Liver Diseases Month
February is Rare Liver Diseases Month, and this year, the Global Liver Institute (GLI) is highlighting the importance of early diagnosis for better health…
ALAGILLE SYNDROME
ColumnsIn the Alagille community, we found people who are speaking our language
I had never heard of Alagille syndrome until my son Finley was diagnosed with it. And in the five years since he was born,…
ALAGILLE SYNDROME
ColumnsA whiff of dish soap brings back memories — and medical trauma
Our brains work in fascinating ways. One moment, you are in the middle of a completely mundane task, and suddenly, you are whisked back in…
International Alagille Syndrome Awareness Day is tomorrow, Jan. 24, and the advocacy organization Alagille Syndrome Alliance is calling on the community to stand together…
ALAGILLE SYNDROME
ColumnsMy child with Alagille syndrome is going through a ‘picky eater’ phase
When I was little, I was a picky eater. A big fan of peanut butter and jelly, I wasn’t super adventurous and didn’t really eat…
ALAGILLE SYNDROME
ColumnsThis year, my son with Alagille will hit 2 major childhood milestones
It’s challenging for me to look far into the future, as I tend to remain grounded in the present. It’s not that I don’t plan…
ALAGILLE SYNDROME
NewsAlagille syndrome linked to glaucoma risk in study of 2 brothers
Two adult brothers with impaired vision due to glaucoma, a serious eye condition that may lead to irreversible vision loss, were found to have…
ALAGILLE SYNDROME
ColumnsMy son is learning the importance of taking his daily medication
As my kids age, I am teaching them responsibility. We talk about their duties at home, at school, and in public. Some of these come…
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