I wish raising children would come with a checklist. Every day there are so many items to check off in addition to work and staying…
Alagille syndrome
ALAGILLE SYNDROME
ColumnsWhy community is important for parents of children with Alagille
I normally reserve this column for sharing stories about my son Finley, who was born with Alagille syndrome in 2021. Obviously, he deserves the…
ALAGILLE SYNDROME
NewsMore collaborative Alagille research is needed, review study says
More collaborative research is needed to better understand Alagille syndrome and to help overcome challenges related to diagnosing and treating it, according to a…
ALAGILLE SYNDROME
ColumnsWhile treatment has helped my son, the itch never entirely fades
If you spend enough time around something, you’ll start to notice it less and less. But that’s not always the case with our 4-year-old son,…
ALAGILLE SYNDROME
News6 JAG1, NOTCH2 gene mutations ID’d as likely cause of Alagille
Researchers in China have identified six new mutations in the JAG1 and NOTCH2 genes as likely causes of Alagille syndrome. In…
ALAGILLE SYNDROME
ColumnsThe value of the yearly pediatrician appointment
For our family, the early months of the year are the season to visit the pediatrician. With both of my boys born in this period…
ALAGILLE SYNDROME
ColumnsWith so many specialists, scheduling appointments can be tricky
Tedious background music drones on repeat. Or worse, a repetitive voice recording reminds you that the lines are full and your call is important. For…
ALAGILLE SYNDROME
NewsPoor access to genetic testing may delay Alagille syndrome diagnosis
Difficulty accessing genetic testing in low- to middle-income countries may delay the diagnosis of Alagille syndrome in children and lead to misdiagnoses that may…
CHOLESTASIS
NewsLivmarli, Bylvay safely reduce pruritus in PFIC, Alagille children
Livmarli (maralixibat) and Bylvay (odevixibat) can help relieve itching, or pruritus, and reduce liver damage in children with progressive familial intrahepatic cholestasis (PFIC) or…
ALAGILLE SYNDROME
ColumnsMy son with liver disease will once again need to take vitamins
There are many aspects of my son Finley’s journey with Alagille syndrome that I wish would stay in the past. One that stands out…
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