PFIC. Rare Disease. Real Lives.
When test results came back, the Bonczyk family finally had the answers they were looking for – Charles had Progressive Familial Intrahepatic Cholestasis (PFIC) – a rare genetic condition that causes increasingly severe damage to the liver and can lead to cirrhosis and complete liver failure. It was no surprise when doctors tested Michelle and she came back positive for PFIC, too. Rosalie said, “it was a relief to find out the cause of all this. It’s too bad we didn’t know sooner.”
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Rare Liver Disease Summit Seeks to Improve Patient Health Outcomes
American Liver Foundation brings together experts, patients and families in a virtual two-day event The American Liver Foundation (ALF) will bring together leading rare liver disease experts and clinicians, patients, caregivers, advocacy organizations and industry ...
Tully Girls Run for Dad
Sarah and Emily Tully have cheered their parents, Deb and Keith, on from the sidelines of the Boston Marathon for nearly a decade as they ran for Team ALF. Last Fall, the torch was passed ...
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PFIC. Rare Disease. Real Lives.
Progressive Familial Intrahepatic Cholangitis (PFIC) ...
Rare Disease Day 2022: Meet the Kostecki Family
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February 28th is Rare Disease Day!
Have you ever wondered what makes a disease a rare disease? Rare diseases are diseases which affect a small number of people compared to the general population. In Europe, a disease is considered rare when ...
Rare Liver Disease Month Focus: Rare Forms of Liver Cancer
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Rare Disease Focus February 2021
There are several hundred liver diseases known to exist-many of which are considered to be rare. What is considered rare? In Europe, 1 in 2,000 is considered to be rare, and here in the United ...
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Liver Awareness Month: Cirrhosis
Let’s Stop the Progression of Liver Disease Did you have a chance to read our blog post about fibrosis and how liver disease is staged? If not, check it out here. As a reminder, fibrosis ...
PBC Q&A with Dr. Gideon Hirschfield
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Tawny’s Memory Loss Was Linked to Her Liver Disease
Six years ago, things began to go from bad to worse for Tawny Blum (pictured above). In her early thirties, Blum was already struggling to manage not one, but two rare liver diseases: primary sclerosing ...
John Donlon’s Challenge
John Donlon, a self-described, "ordinary Joe" who didn’t play sports in college, is doing something fewer than 1,700 people have ever done – swim the English Channel. And he's using the occasion to raise awareness ...
New Research on Alpha-1 Antitrypsin Deficiency
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Rare Liver Diseases
Alpha-1 Antitrypsin Deficiency and Alagille Syndrome Rare liver diseases are not so rare if they affect you or someone you love. There has been a lot of attention on more common liver diseases recently, such ...
Last Updated on March 1, 2022
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