A family whose experience with biliary atresia led to an effort to help others navigate the challenges of pediatric liver disease is among those being…
Alagille syndrome
LIVER DISEASE
NewsALF unveils network to connect living donors with strangers in need
The American Liver Foundation (ALF) is launching a first-of-its kind national database, called the ALF Living Donor Network, to connect people willing to…
LIVER DISEASE
NewsKnow your risks – and options – this National Liver Awareness Month
October is National Liver Awareness Month and Liver Cancer Awareness Month, and advocacy organizations across the U.S., including the American Liver Foundation (ALF), are…
ALAGILLE SYNDROME
ColumnsOptimism replaces worry following a post-surgery scare
Back in August, I wrote about managing my worries as we prepared for a small surgery to correct a hydrocele in our 4-year-old son,…
ALAGILLE SYNDROME
ColumnsAdapting to a new routine is made harder by regular hospital visits
Our family has been extremely busy lately. The beginning of the school year is always an exciting yet exhausting time as we settle back into…
ALAGILLE SYNDROME
NewsBylvay now approved in Canada to treat adults, children with Alagille
Bylvay (odevixibat), an oral medication used to treat cholestatic pruritus — severe itching that results from a buildup of bile acids used in digestion —…
ALAGILLE SYNDROME
ColumnsSavoring the everyday moments that bring joy to our lives
When my youngest son, Finley, was diagnosed with Alagille syndrome, a million questions flooded my mind. I wanted to know if he’d be able…
When I brainstorm ideas for columns, I often end up focusing on similar themes, such as anxiety, stress, complications, difficulties. All those are definitely…
ALAGILLE SYNDROME
NewsNew Alagille syndrome therapy named ART4 gets FDA designations
The U.S. Food and Drug Administration (FDA) has granted orphan drug and rare pediatric disease designations to ART4, an experimental therapy for Alagille syndrome…
ALAGILLE SYNDROME
ColumnsFacing unexpected complications after a routine surgery
The last few weeks have been a roller coaster as we near the end of summer, prepare for school to start, and navigate a surgery…
Recent Posts
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- Change is good, but in life with MASH, it’s important to start small
- It turns out that having great friends is good for my health
- With Alagille syndrome, summer fun comes with a summer caution
- Gene therapy shows early promise for fatal childhood liver disease