As someone who tends to be introverted, I saw advocacy as daunting. I had a narrow understanding of how it could look. But after my…
Alagille syndrome
ALAGILLE SYNDROME
ColumnsMedical supply ordering can be stressful for an Alagille parent
There are many hurdles that come with rare genetic conditions. One obstacle my family has struggled with recently is that the supplies we need are…
ALAGILLE SYNDROME
NewsResearchers develop new way to recognize Alagille-causing mutations
A team of researchers has developed a new screening system to identify previously unrecognized mutations as the likely cause of Alagille syndrome. In a…
ALAGILLE SYNDROME
ColumnsWhy I sometimes feel fear of the future for my youngest son
Parenting brings many challenges, but there’s one that’s always front and center for me: keeping my sons safe and secure. As they’re 6 and 3…
CHOLANGITIS
NewsEMA committee recommends Iqirvo approval for PBC in Europe
A European Medicines Agency (EMA) committee has recommended the approval of Ipsen‘s Iqirvo (elafibranor) as a second-line therapy for adults with primary biliary…
ALAGILLE SYNDROME
ColumnsThe latest obstacles we faced in getting my son’s blood drawn
After my wife, Dani, and I entered the world of Alagille syndrome and became advocates, we aimed to provide a view of everyday life…
ALAGILLE SYNDROME
NewsDupilumab works as itching treatment in Alagille case: Report
The use of dupilumab, an approved anti-inflammatory antibody-based treatment, worked to ease itching, known medically as pruritus, in a young woman with Alagille syndrome…
ALAGILLE SYNDROME
ColumnsWorrying about water play for our son with Alagille syndrome
Our kids love the water. When our lovely Pacific Northwest weather finally turns warm enough, they both beg to pull the inflatable pool from storage.
ALAGILLE SYNDROME
ColumnsA parent’s dilemma: How to get a child with Alagille to eat enough
Feeding small children is a daunting process for parents. Will they eat what’s been prepared? How much of a mess will they make? Are they…
ALAGILLE SYNDROME
NewsEU initiative aims to improve early detection of rare genetic diseases
An initiative in the European Union (EU) aims to speed up the diagnosis of rare genetic disorders such as Alagille syndrome in newborns using…
Recent Posts
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- Human trial testing gene silencing injection therapy for MASH kicks off
- 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