PBC Awareness

03/31/2026

Thank you all for your participation! We had over 400 entries for our PBC Patient Tool Kit Survey! Congratulations to our winner, Analissa Medina !

Your individual and collective suggestions will help us to create a comprehensive and resourceful kit for PBC patients and caregivers! We will keep you informed of when they will be made available. Keep following for updates!

03/31/2026

Health Liver starts with good nutrition.

A healthy liver starts with good nutrition!

This National Nutrition Month, be sure to include these top foods for liver health in your diet:
🥬 leafy greens
🥦 cruciferous
🍣 fatty fish
🫐 berries
🥜 nuts and seeds
🧄 garlic
🥑 avocado
🍊 citrus fruits
🥒 fermented foods
💦 and don’t forget to stay hydrated!

A nutritious and healthy diet can help to reduce fat and inflammation in the liver, potentially reversing MASLD/MASH (https://www.mayoclinic.org/) 💜

03/31/2026

📢 PBC Community, TONIGHT, don't miss the Northeast Ohio Liver Alliance virtual discussion on "Liver transplants"... Register here: https://app.etapestry.com/onlineforms/NortheastOhioLiverAlliance/LiverABCs.html

Join us for our upcoming patient roundtable webinar on *The ABCs Of Waiting For A Liver Transplant* on March 31st presented by panelists Maura George, RN, BSN, CCTC, Ashley Hepner, CNP, and Natalie Crtalic-Lowther MFN, RD, LD with moderator Mary Penko, BSN, RN, CCTC!

During this webinar, our panel of experts will be:
-discussing the importance of hepatitis A and B vaccinations for transplant candidates
-reviewing the necessity of proper nutrition while awaiting transplant
-explaining the different organ donors used in transplant
-discussing "Dry Runs" - what are they and why do they occur?

As always with our webinars, questions are encouraged and our panelist will do their best to get through as many as they can!

For more information and to register for free, visit: https://liveralliance.org/events/liverabcs/

03/30/2026

Today, on Doctors’ Day 2026, we pause to recognize and celebrate the physicians who show up every day with skill, compassion, and unwavering commitment to their patients.

At PBC Awareness, NFP, we offer our deepest gratitude to the doctors who care for individuals living with rare diseases—often navigating complex diagnoses, limited treatment options, and long patient journeys with both expertise and empathy.

Your dedication does more than treat conditions—it restores hope, advances understanding, and improves quality of life for millions. For those living with rare diseases like Primary Biliary Cholangitis (PBC), your commitment to listening, learning, and advocating makes all the difference.

We especially honor the , researchers, and healthcare teams working tirelessly to advance liver disease care and bring visibility to conditions that are too often overlooked.

Thank you for standing beside patients, for pushing the boundaries of science, and for being champions of care in every sense of the word.

03/30/2026

Thanks for being a top engager and making it on the weekly engagement list! 🎉 Shawna Nicole, Kimberly Ludwig, Michaela Haney, Kathy Mundell, Cathy Whitten, Dawn Rossman, Pamela Hudson, Lynda Ramsey-Bradshaw, Jan Norman, Maura Gillespie, Karen Dicker, Mariko Okada, Madeline McLaughlin
Bringing .

03/30/2026

Today is the final deadline for the PBC Survey! If you want a chance to win an Amazon gift card and lend your voice, here is your opportunity!

Click on the link below to submit your thoughts!

https://forms.gle/frSTJKNLVBaxbNot7

03/29/2026

Pop-Up Zoom call tomorrow! An informal Meet & Greet for all of our followers! We'd love to meet you all. Hop on the call and let's start a conversation!

https://us06web.zoom.us/.../register/GB2GTDDlRy-d5VZ7gXq7-g

03/29/2026

Gilead Sciences arranged for an artist to meet with four women living with PBC so she could directly hear each person's unique story — her path to diagnosis, the symptoms she has, how she feels about them, how the symptoms affect her daily life, and how her life was before and after the diagnosis of PBC. A key part of this was understanding not just their medical experiences but their personalities and their emotions and the resilience they have to have when living with this disease.

She then created four paintings to capture the essence of each woman's story (one of which was captured live at EASL). She also added a fifth piece, which was a depiction of this invisible person living with PBC, symbolizing that many of these people struggle in silence. They don't know how to interpret their symptoms or they don't know how to bring them up with their healthcare provider, often causing a delay in diagnosis.

The paintings are absolutely beautiful, and they really draw people in and invite them to reflect deeply and encourage healthcare providers to connect emotionally with the story behind the art.

https://www.clinicalleader.com/doc/gilead-art-campaign-captures-the-pbc-patient-experience-inspires-patient-centric-trials-0001

Gilead’s Carrie Frenette discusses the companys art campaign centered on primary biliary cholangitis to bring awareness to the condition and create more patient-centric trials for patients.

03/29/2026

Nour’s paintings translate the experiences of patients into a visual art form by vividly portraying the daily challenges of living with PBC and amplifying patients’ emotions. Dilek was the first patient she painted and Nour describes what she captured during the session.


via Gilead Sciences

The “All the Feelings with PBC” campaign is helping patients express their often-hidden symptoms. Watch the video here.

03/29/2026

United. Amplified. AND Stronger Together 💪🏾. Our founding board member/President L Marie Asad represented PBC Awareness, NFP in Washington D.C. alongside 146 other rare disease patient advocacy groups. A special thank you to EveryLife Foundation for Rare Diseases and Rare Disease Legislative Advocates for including us in this reel. 🦓