Raising my son Finley, who was born with Alagille syndrome, has taught me to adapt to countless challenges, including new medications, unfamiliar terminology, and…
Alagille syndrome
ALAGILLE SYNDROME
NewsLivmarli clears severe skin growths in 2 boys with Alagille syndrome
Livmarli (maralixibat) successfully cleared rare, debilitating fatty skin growths and eased chronic itching in two young boys with Alagille syndrome in the U.S., according…
ALAGILLE SYNDROME
ColumnsCelebrating a major milestone with a 5th birthday party for the ages
One of the greatest joys of watching our son Finley grow up has been witnessing his growing appreciation for milestones and special occasions. Most recently,…
ALAGILLE SYNDROME
ColumnsI’m grateful my son has a care team that truly cares
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
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…
Recent Posts
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- Gestational diabetes boosts risk of liver issue during pregnancy: Study
- Learning how to let go of worry isn’t easy as an Alagille parent