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Bonczyk Family

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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Kaila’s Story

Hemochromatosis ...

Casey’s Story

Wilson Disease ...

PFIC. Rare Disease. Real Lives.

Progressive Familial Intrahepatic Cholangitis (PFIC) ...

Rare Disease Day 2022: Meet the Kostecki Family

You're on Your First Family Vacation and Suddenly Your Child Falls Ill You’re in a foreign country, thousands of miles away from home and your thoughts begin to race – was it something she ate, ...

Lisa’s Story

Bile Duct Cancer (cholangiocarcinoma) Learn More about Bile Duct Cancer The word cholangiocarcinoma was not part of our vocabulary till 2010, along with words like tumor markers, bilirubin, liver panels, bile ducts and so many ...

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

Liver cancer is cancer that occurs in the liver. Primary liver cancer is cancer that begins in the cells of the liver. Secondary liver cancer develops when cancer cells from another part of the body ...

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 ...

Heather

Diagnosed with Acute Hepatic Porphyria (AHP) ...

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

Dr. Gideon Hirschfield is a leading voice in the field of autoimmune liver disease. Dr. Hirschfield is the inaugural Lily and Terry Horner Chair in Autoimmune Liver Disease Research at the Toronto Centre for Liver ...

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

Alpha-1 Antitrypsin Deficiency (Alpha-1) is a genetic (inherited) condition, passed from parents to their children through their genes. Alpha-1 may result in serious lung disease in adults and/or liver disease at any age. For each ...

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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