When writing this column, I’ve understandably focused on the various medical complexities, situations, and emotions resulting from my son Finley’s Alagille syndrome diagnosis. I…
A six-month-old baby with Alagille syndrome showed atypical biliary tract abnormalities, including a narrower main bile duct and a gallbladder with a corkscrew-like shape,…
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…
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…
A team of researchers has developed a new screening system to identify previously unrecognized mutations as the likely cause of Alagille syndrome. In a…
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…
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…
After my wife, Dani, and I entered the world of Alagille syndrome and became advocates, we aimed to provide a view of everyday life…
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…
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.
