The complexities of parenting siblings of a chronically ill child
One thing I aim to do by writing this column is to bring some focus to what life looks like when raising a child…
Alagille syndrome
The unique challenges of traveling with children who have liver disease
Traveling with small children is challenging. While the destinations that are visited and the memories that are created are worth it, getting there entails a…
World Liver Day to raise awareness of Alagille, other liver diseases
April 19 is a day set aside to raise awareness of liver diseases such as Alagille syndrome. It’s World Liver Day, a global…
Shoe shopping for a child with Alagille was surprisingly difficult
I love shoes. Shoe collecting has been a hobby of mine for quite some time. A good pair of sneakers or boots can take your…
Our son’s smaller size from Alagille syndrome creates obstacles
There are several words I’d use to describe my 3-year-old son, Finley. My wife, Dani, started a tradition for our two boys where each night…
Pruritus treatment Livmarli should be reimbursable: Canadian panel
A Canadian Agency for Drugs and Technologies in Health (CADTH) committee has recommended that Livmarli (maralixibat) be covered by the country’s publicly funded health…
Hearing the haunting words ‘failure to thrive’ to describe your baby
Feeding your newborn child can be stressful. There are so few things they can control in their young lives. It’s common for children to learn…
Brain blood vessel abnormalities in Alagille usually stable over time
Blood vessel abnormalities in the brain, such as unusually narrow or bulging vessels, are common in children with Alagille syndrome and remain generally stable over…
Livmarli’s long-term benefits in Alagille extend beyond itch: Study
Up to six years of treatment with Livmarli (maralixibat), which is approved for reducing itch, or pruritus, in Alagille syndrome, prolonged survival and…
Livmarli eases itch for broader pediatric population with Alagille
Livmarli (maralixibat) safely and effectively eases itching caused by Alagille syndrome in children who would have been excluded from the clinical trials that…
Recent Posts
- How I’m learning to cope with challenges as a rare disease parent
- IBAT inhibitors have potential to boost life quality for patients
- Trial of HBV treatment candidate now enrolling final patient group
- Cour’s CNP-104 granted FDA orphan drug status for treating PBC
- Maralixibat Phase 3 trial for cholestasis-related itch is enrolling