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PFIC Voices in the news: Stories about people living with this ultra-rare disease.

PFIC Patient Describes Her Diagnostic Journey

Kealey-Shay Spolijarevic has progressive familial intrahepatic cholestasis (PFIC), a rare hereditary disease in which an individual is unable to properly remove bile acids from their liver. She describes an overall of her diagnostic journey.

Une femme de Calgary parle des défis liés à la vie avec une maladie rare

«Mon état est plutôt bon. Les autres types seraient plus graves et causeraient plus de problèmes, en particulier dans la petite enfance. Mais aussi, beaucoup de mes symptômes n’ont pas été remarqués dans la petite enfance parce qu’ils n’étaient tout simplement pas perceptibles », a déclaré Spoljarevic.

What Is Was Like When My Two Sons Got a Rare Liver Disease Diagnosis

Like so many young couples, my husband and I knew we wanted to start a family. That day came on May 31, 2000, when Evan, our first of three sons, was born. Despite jaundice that appeared for about a week after his birth, he was as healthy a newborn as any parent could hope for.

Liver transplant helps Eden boy with rare disease

SALISBURY — After a long struggle, 10-year-old Trey Kearns is ready to thrive. Trey, who is from Eden, Maryland, suffers from the rare genetic condition known as PFIC, or progressive familial intrahepatic cholestasis. It typically leads to liver failure before adulthood and causes an all-over itch that can lead kids to scratch incessantly.

Local family taking extra precautions for young daughter who is a liver transplant recipient

Kennedie Knakmuhs is 2 1/2 years old and a liver transplant recipient, so her family in Parker, CO must take many extreme measures to protect her during the COVID-19 Pandemic. Kennedie’s mother, Emily, shares more about her daughter’s rare and life-threatening disease known as PFIC, and she offers advice to other families with immunocompromised loved […]

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