DIGITAL SPOTLIGHT LAUNCH - PROGRESSIVE FAMILIAL INTRAHEPATIC CHOLESTASIS(PFIC)
RARE Revolution Magazine
Accessible publication for the Rare Disease Community
Introducing this week’s Digital Spotlight. Sponsored by Ipsen , this week we will be sharing the experiences of patients, caregivers, advocacy organisations and HCPs with progressive familial intrahepatic cholestasis (PFIC). Read more here .
Learn more about The impact of progressive familial intrahepatic cholestasis (PFIC) in our condition overview and infographic article here.
Laura S?e Jakobsen was diagnosed with a rare condition that affects the liver called progressive familial intrahepatic cholestasis (PFIC) type 3 (PFIC3). People with PFIC3 generally develop signs and symptoms during late infancy or early childhood. In Laura’s case, she was not diagnosed until she was 14. Read her story here .
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Francesca’s world was turned upside down when her daughter, Eva Luna, was diagnosed with a genetic liver disease months after birth. Without liver transplant only around 50% of children with PFIC survive to the age of 10.1 Francesca feared the worst for her daughter’s future, and the toll this would take on her son, Ernesto. Now five, Eva Luna is thriving and loving life, and Francesca is the driving force behind a flourishing patient support group that is a lifeline for families around the globe. Read their story here .
After her five-month-old daughter’s diagnosis with progressive familial intrahepatic cholestasis (PFIC) in 2012, Emily Ventura needed to wait three years to connect with others in the PFIC community. Today, the PFIC Network strives to ensure that no? family experiences the disease in isolation. Read Emily’s story here .
Dr Patrick McKiernan describes the rare liver disease progressive familial intrahepatic cholestasis (PFIC) and shares his personal views on the challenges of diagnosis, treatment and care. Read more here .
Special thanks to our wonderful contributors for providing their impactful perspectives on progressive familial intrahepatic cholestasis (PFIC) and to Ipsen for sponsoring this Digital Spotlight. You can read all articles here: https://rarerevolutionmagazine.com/digital_spotlights/pfic
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