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Why I Participate in Clinical Trials for My Rare Disease

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themighty.com

As someone who has been diagnosed with a rare, autoimmune, progressive and chronic liver disease called primary biliary cholangitis (PBC), it is incredibly important to me to participate in clinical trials whenever possible.

Without participation from the rare disease patient population, we can never hope to achieve effective treatment or possibly even a cure for our disease.

In my case, having PBC is a double-edged sword. PBC destroys the small bile ducts within the liver over time, leading to scaring (cirrhosis) and eventually end state liver disease (ESLD, also known as liver failure) in some, requiring a transplant.

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