About PFIC Voices
We heard the voices of families with progressive familial intrahepatic cholestasis.
We created PFIC Voices to educate about the true burden of PFIC. And we’re dedicated to helping families better understand this devastating disease.
Few people know about the ultra-rare liver disease PFIC. It can leave affected families feeling isolated and alone. We work with advocacy groups to bring clear, useful resources to PFIC caregivers and their families. We must join and raise our PFIC voices. Loud. Clear. And with purpose.
PFIC is a progressive liver disease that often leads to liver failure. It can even be fatal by early adulthood. There is no time to wait.
Who created PFIC Voices?
Raise your PFIC voice
1. Empower yourself by learning about PFIC
Download your free guide to PFIC to learn more about this life-threatening pediatric liver disease. Know how to spot the debilitating symptoms. Find support through our resources page.
2. Advocate for those with PFIC
Whether your child suffers from PFIC or you know someone with the disease, every voice matters. Connect with PFIC families. Speak up. And speak loudly.
3. Stay informed. Subscribe to PFIC Voices
Receive updates on the latest resources and research as they become available.
Other rare liver diseases
Cholestatic liver diseases such as PFIC occur when bile can’t properly flow from the liver. Different forms of cholestatic liver disease may show the same symptoms. If you or someone you know shows symptoms of PFIC, Alagille syndrome, or biliary atresia, see a liver specialist for a proper diagnosis and confirm the condition with genetic testing.
Alagille syndrome can impact the liver, brain, heart, eyes, face, and skeleton. Symptoms include jaundice; itchy skin; bumps on the skin caused by deposits of cholesterol and fats; pale, loose bowel movements; poor growth; and abnormally shaped bones. Learn more about Alagille syndrome.
Biliary atresia may appear as soon as two to eight weeks after birth. Symptoms include jaundice, dark urine, clay-colored stools, weight loss, slow growth, and irritability. There is no current medication available and 85-percent of children with the condition may require a liver transplant. Learn more about biliary atresia.