One thing that’s important to me as a parent raising a child with a rare genetic condition is to be able to help share the…
Alagille syndrome
ALAGILLE SYNDROME
NewsHeart risks in Alagille syndrome may go beyond artery narrowing
Children hospitalized with Alagille syndrome commonly had narrowing in the branches of the pulmonary artery, which carries blood from the heart to the lungs,…
When you have a child with a rare genetic condition, you realize quickly that there’s no blueprint for raising their siblings. When my son Finley…
ALAGILLE SYNDROME
ColumnsA ‘graduation’ photo prompts reflection on a family’s Alagille journey
I’ve found myself reflecting a lot recently as my two boys close their current chapters in life and head into new ones. Part of what…
ALAGILLE SYNDROME
NewsNew lab-grown cells may improve Alagille syndrome variant testing
A new type of genetically engineered lab-grown cell may help researchers determine whether certain genetic variants can contribute to Alagille syndrome, a study reports.
ALAGILLE SYNDROME
ColumnsI don’t want my son’s small size to keep him from doing what he enjoys
As a dad, I enjoy seeing my sons figure out what interests them. I have two boys — Jackson, 8, and Finley, 5 — and…
ALAGILLE SYNDROME
NewsLivmarli helps clear fatty skin growths in Alagille kids, study finds
Treatment with Livmarli (maralixibat) can reduce cholesterol levels and help clear fatty skin growths called xanthomas in children with Alagille syndrome, according to…
BILIARY ATRESIA
NewsBiliary atresia, Alagille linked to oral problems in children, young adults
Children and young adults with biliary atresia or Alagille syndrome more frequently experience oral problems and poor oral hygiene than their healthy peers,…
ALAGILLE SYNDROME
NewsItching at night tied to sleep problems for Alagille kids – and their caregivers
Due to itching at nighttime, children with Alagille syndrome often experience substantial problems getting a good night’s sleep, leading to poor rest not only…
Rare genetic liver conditions like progressive familial intrahepatic cholestasis (PFIC) and Alagille syndrome pose a substantial financial and quality-of-life burden on families, a study…
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