PBC Awareness

08/06/2026

08/05/2026

Thank you, Sandy Rose, for sharing your PBC journey on the next episode of PBC Warrior! She discussed her recent diagnosis and provided valuable advice that anyone can use!

https://youtu.be/brSaY8yZzr8

If you would like to be a guest on a future episode of PBC Warrior, send us a message. We'd love to hear from you!

08/04/2026

Click below to register for a FREE three-day virtual summit that focuses on autoimmune diseases! The Autoimmune Association is hosting this event to promote community and information. Please reach out to them for more details.

One of the biggest reasons people tell us they register? Flexibility.

Every Autoimmune Community Summit session will be recorded and available on demand, so you can join live when you can and watch later when life gets in the way.

Three days of learning, connection, and empowerment—on your schedule.

Register: go.autoimmune.org/summit26

08/03/2026

August is the last month of the summer, and it has been a scorching one! How are you beating the heat and ending the season? Let us know in the comments below!

07/31/2026

07/31/2026

NORD Submits Formal Comments to CMS Urging Changes to Align the Final Rule with Congressional Intent and Protect Medically Frail People with Rare Diseases

07/31/2026

Many in our PBC Awareness community living outside of the United States have asked if Lynavoy is only available in the United States. Currently, it has only been approved for use in America, but that may not be the case for too long! Lynavoy has just been recommended for approval in Europe! This is a major step forward because it targets one of the most frustrating and life-altering symptoms of PBC: the intense itch that can ruin sleep and drain your energy.

Clinical trials showed that it provides rapid, significant, and lasting relief from itching.

Many people with PBC don't get treatment for their itch, and it can be overlooked by doctors. This new option brings much-needed attention and a potential solution to this specific, daily struggle.

This recommendation brings us one step closer to having a new, approved tool to improve daily quality of life for PBC patients. It shows that the medical community is listening and working hard to address not just the liver disease, but the very real, everyday symptoms that make living with PBC so challenging.

Stay tuned for a final decision from the European Commission—and keep talking to your doctor about all the options to help you feel better. Help is on the way!

First IBAT inhibitor for PBC cholestatic pruritus

07/30/2026

A recent member of our PBC Awareness community was so moved by your stories that she felt the courage to share her own, understanding that each individual has the power to affect change and inspire others. The PBC community is not a monolith, but you are also not alone. Your experience living with PBC is a journey that few will understand but the more awareness we bring to this disease, the greater impact it will have on those living through it. If you would like to contribute your story to our PBC Warrior series, reach out! We're here to amplify your voice for the world to listen!