PBC Awareness

02/27/2026

Rare Disease Day is on Feb. 28th, 2026, and we, the PBC community, are committed to supporting the broader rare disease community. Over 300 million people suffer from rare diseases worldwide. When we work together, we heal the world!

We thank all of the participants who have shared their voices on this project. We could not have made this video without your support!

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Send a message to learn more

02/27/2026

Cook County, Illinois, has officially designated February 28, 2026, as Rare Disease Day and March 25, 2026, as Illinois Rare Disease Day! We would like to extend our gratitude to the state of Illinois and our representatives for their commitment to the 530,000 citizens diagnosed with rare diseases. Your recognition plays a vital role in raising awareness and providing support for rare disease patients and their families.

Thank You!

02/27/2026

The benefit of being "one amongst many" is that you are never alone. This week is evidence of what organization, community, and unity can accomplish when we come together for one purpose: to raise our voice with the objective of being seen and heard. Our stories shape policy, and our presence shifts systems.

02/26/2026

According to an article by Sarah Winfrey on MyPBCTeam.com, it is highly beneficial for PBC patients to have a holistic team focused on their well-being. While it can be daunting to assemble a strong team of specialists dedicated to your health, the impact of having a committed team working for you is significant. Read the article below for tips on how to assemble your ideal team of experts!

https://www.mypbcteam.com/resources/pbc-specialists-types-of-doctors-to-have-on-your-care-team

02/26/2026

We're proud to be among the hundreds of advocates across the country representing the Primary Biliary Cholangitis (PBC), community at the EveryLife Foundation for Rare Diseases 🦓



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Day 2 of ! We are grateful for our empowering advocates who make this incredible event possible. We admire your dedication and enthusiasm for enacting change. Thank you to our staff for organizing this major event that is bigger than ever this year.

Thank you to all our sponsors for their support

If you could not attend in person for Rare Disease Week, watch the livestream of all the major events on our page: https://everylifefoundation.org/rare-advocates/rare-disease-week-2025/rare-disease-week-attendee-corner-virtual-rare-disease-week/

Today's next stop, Capitol Hill...

02/26/2026

We're starting our day at the U.S. Senate Special Committee on Aging hearing to examine the U.S. Food and Drug Administration (FDA) role in the rare disease community. In recent months, several difficult regulatory decisions have affected clinical trials and review timelines for products with direct implications on the rare disease patient community (for example, complete response letters, refusals to file, and incomplete response).
During EveryLife Foundation for Rare Diseases

02/25/2026

News from the Food and Drug Administration- it's been reported that the FDA has received a proposal to create a policy that would accelerate rare disease patient access to new technologies. If approved, patients would be able to receive treatment they otherwise may not have. This could save lives. PBC Awareness is committed to keeping our followers informed on news that affects the PBC community. Click on the link below to read more.

https://www.inc.com/ava-levinson/fda-change-rare-disease-patients/91307271

The framework was released as draft guidance on February 23.

02/25/2026

2026 Illinois Rare Disease Day in Springfield
March 24, 2026 - March 25, 2026
Join patients, families, caregivers, and the entire rare disease community for this impactful event as we raise awareness and educate Illinois legislators about the challenges faced by our community.

🖤March 24, 2026: Reception from 5-7:30 pm (Bloom Wine Bar & Florals, 2 S Old State Capitol Plaza, Springfield, IL 62701)

🤍March 25, 2026: Rare Disease Day, Breakfast & Programming, 9-11 am (President Abraham Lincoln Springfield, a DoubleTree by Hilton, Governor Altgeld Room, 701 E. Adams St., Springfield, IL 62701)

🖤Registration provides access to both reception and March 25 briefing.

Register at NO COST here: https://ibio.app.neoncrm.com/nx/portal/neonevents/events?path=%2Fportal%2Fevents%2F35034

02/25/2026

More than 30 million Americans are living with a rare disease — and within that community are individuals facing ultra-rare diseases, conditions so uncommon that only a handful of people may be diagnosed worldwide.

So what makes a disease “rare”?

In the U.S., a rare disease is defined as one affecting fewer than 200,000 people. An ultra-rare disease goes even further — often impacting fewer than 1 in 50,000 people, leaving many patients navigating long diagnostic journeys, limited treatments, and the need for stronger awareness.

Behind every statistic is a real person, a family, and a community advocating for answers, research, and equity in care.

As we recognize Rare Disease awareness, let’s remember:
🖤 Rare is common — 300 million worldwide
🤍 Ultra-rare voices deserve to be heard
🖤Patient advocacy drives progress

02/25/2026

New research suggests statin use in patients with primary biliary cholangitis was linked to a lower risk of hepatic decompensation and major adverse liver outcomes. The findings add to growing evidence that statins may offer benefits beyond cardiovascular risk reduction—but questions remain about optimal use and patient selection. https://mdsc.pe/4rTZy6M

02/24/2026

We are dedicated to advocating for health equity and access to care within the PBC community. It is essential that patients receive adequate resources, information, and education about their condition.

PBC Awareness is committed to ensuring that primary biliary cholangitis is recognized and represented in the broader rare disease community. Tomorrow marks the beginning of Rare Disease Week on Capitol Hill.

This free event offers a valuable opportunity to connect with others in the rare disease community.

Click the link below to register:

https://everylifefoundation.org/rare-advocates/rare-disease-week/?utm_medium=email&_hsenc=p2ANqtz-8bjinRpEgLCActm5kCM4LnUGnJtk-bnoi-oVtE4n1RUo6OUs8JoKq5bXcFo-PEKdP7bfAePvDvrNTWSAk5F61lmTVjpQ&_hsmi=399717681&utm_content=399717681&utm_source=hs_email

02/24/2026

✨️Common Symptoms of PBC
Early stages often show no symptoms, which makes diagnosis tricky. As the disease progresses, symptoms may include:

✅️Fatigue or low energy
✅️Itchy skin
✅️Dry eyes or dry mouth
✅️Pain or discomfort in the upper right side of the abdomen
✅️Dark urine or pale stools
✅️Yellowing of the skin or eyes (jaundice)
✅️Joint or muscle pain
In advanced cases, PBC can cause cirrhosis, swelling in the abdomen (ascites), and bone loss (osteoporosis).

Frequent diarrhea that lasts for weeks may signal issues like IBS or infection. Learn causes, risks, and when to seek medical attention.