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
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…
ALAGILLE SYNDROME
NewsAlagille Syndrome Awareness Day seeks to unite global community
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…
ALAGILLE SYNDROME
NewsMedications known as IBATIs are safe, effective in Alagille: Analysis
Livmarli (maralixibat) and Bylvay (odevixibat) not only offer significant relief from severe itching in children with Alagille syndrome, but also improve quality…
ALAGILLE SYNDROME
ColumnsSoaking in the season of joy is extra special this year
Raising kids is tough. Speaking for myself, as someone who often recharges with alone time, having two young boys has been a struggle at times.
Recent Posts
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- Gene therapy shows early promise for fatal childhood liver disease