PBC Awareness
(opens in a new tab)PBC Awareness, NFP is an independent, founder-led and board-governed 501(c)3 dedicated to elevating patient voice, advancing education, and expanding national awareness of Primary Biliary Cholangitis (PBC)
THE 1-YEAR MARK: WHY YOUR PBC BLOODWORK MATTERS SO MUCH
When you're taking ursodeoxycholic acid (UDCA) — the standard first-line treatment for PBC — your doctor likely checks your bloodwork regularly. But a new study presented at AASLD 2026 shows just how important that 12-month check-in really is.
Here's the simple version:
Researchers looked at real-world data from nearly 3,000 PBC patients to see if responding well to UDCA at 1 year made a difference in long-term health. They found that it absolutely does.
What they found:
*Patients who responded well to UDCA at 12 months (defined as ALP ≤130 U/L and bilirubin ≤1.0 mg/dL) had a lower 5-year risk of serious liver complications (10.2% vs. 17.8% for non-responders).
*They also had a lower risk of death over 5 years (12.2% vs. 16.3%).
*Non-responders were much more likely to need second-line therapy.
Why this matters for you:
The lead researcher emphasized that response predicts outcomes in real-world care — and that "nonresponders carry a risk." The key takeaway? If you're not responding to UDCA by the 1-year mark, it may be time to talk to your doctor about escalating treatment without delay.
While UDCA works well for many, about 20% to 40% of patients don't respond biochemically at 12 months. That's why monitoring your ALP and bilirubin at that 1-year mark is so important.
👉🏾 Do you know your 12-month lab numbers? If not, add it to your list of questions for your next appointment.
#PBCAwareness #PrimaryBiliaryCholangitis #PBCResearch #LiverHealth #AASLD2026
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Response to Standard PBC Treatment at 1 Year Linked to Lower Long-Term Risks
www.medpagetoday.com
'Response predicts outcomes in real-world care, and nonresponders carry a risk,' researcher says
That itch with PBC? You don't have to just live with it!
Swipe through to learn:
🔹 What PBC itch really is
🔹 Why your labs don't tell the whole story
🔹 The difference between treating PBC and treating the itch
🔹 New FDA-approved options (including Lynavoy)
🔹 Other treatments your doctor may try
🔹 What to do next
You deserve relief. Keep advocating for yourself!
Save this. Share it. Bring it to your next appointment.
#PBCItch #PrimaryBiliaryCholangitis #PBCAwareness #LiverDisease #RareDisease #ChronicIllness #PatientAdvocacy #ItchRelief
Learn more here.....
primarybiliarycholangitis.net/living/itch-treatment
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Tune in for the virtual viewing experience of Beyond Tired and continue the conversation around the impact of PBC-related fatigue. Everyone is welcome—people with PBC, loved ones, healthcare providers, you name it!
Click the link below to view the trailer!
youtu.be/eRP6cjYIw40?si=Yilg5E5hvr0abWNr
#PBCAwareness #PrimaryBiliaryCholangitis #
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NEW RESEARCH: A STEP CLOSER TO NORMAL LIVER NUMBERS FOR MORE PBC PATIENTS
If you live with PBC, you probably know about ALP (alkaline phosphatase) — a key marker doctors look at to see how active the disease is. For many patients, getting ALP back into the normal range has been a challenge.
But new results from the phase 3 ELSPIRE trial are offering real hope.
Researchers looked at patients whose ALP was still elevated despite taking the standard first-line medication (UDCA). They tested adding elafibranor to their treatment.
The results were striking:
✅ 85.3% of patients taking elafibranor achieved normal ALP levels, compared to only 23.3% on placebo.
📉 ALP dropped by an average of 36.5% in the elafibranor group, with improvements seen as early as 4 weeks.
🛡️ Safety was generally consistent with earlier studies — no new safety concerns emerged. Weight gain of more than 5% was more common with elafibranor (22.6% vs. 6.7%).
Why does this matter?
For years, the goal was just to lower ALP to an "acceptable" level. But a growing body of evidence suggests that getting ALP back to normal may be linked to better long-term liver outcomes. As one of the study authors put it, these results support the idea that "earlier treatment with a second-line drug like elafibranor" may be worth discussing with your care team.
Important context: This study included mostly White participants, and more research is ongoing to confirm long-term outcomes. But for many patients, these numbers represent real hope. This is a reminder that it is necessary for patients of color to participate in these studies so scientists will understand the efficacy of drugs on every patient.
👉🏾 If you're on UDCA and your numbers are still elevated, what questions do you have for your doctor? Share below. (Doctors take note!)
#PBCAwareness #PrimaryBiliaryCholangitis #PBCResearch #LiverHealthMatters
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Elafibranor Added to UDCA Normalizes ALP in PBC
www.medscape.com
Adding elafibranor to UDCA normalizes alkaline phosphatase in 85% of patients with PBC, results of the phase 3 ELSPIRE trial show.
💚 BIG NEWS! WASHINGTON, D.C., HERE WE COME!
📣 SAVE THE DATE: SEPTEMBER 10–13, 2027!
In celebration of PBC Awareness Month and International PBC Day, PBC Awareness, NFP is excited to announce our 2027 PBC Patient Education Conference in the Washington, D.C. area! 🎉
💚 This is more than a conference. It's a movement to elevate patient voices, empower lives, and strengthen our PBC community!
We're bringing together patients, caregivers, healthcare professionals, researchers, and advocates for an unforgettable opportunity to:
✨ Learn about the latest PBC research, treatments, and advancements.
✨ Connect with leading medical experts and fellow patients.
✨ Explore resources to navigate life with Primary Biliary Cholangitis (PBC).
✨ Build meaningful connections and strengthen our patient community.
✨ Amplify patient voices and advance health equity in rare liver disease care.
Whether you're newly diagnosed or have been navigating PBC for years, YOU BELONG IN THIS ROOM!
📍 Washington, D.C. Area
📅 September 10–13, 2027
💚 2027 PBC Patient Education Conference
Additional details regarding registration, accommodations, speakers, and opportunities to participate are coming soon!
📣 HELP US SPREAD THE WORD! Tag a PBC warrior, caregiver, or healthcare professional who needs to know about this exciting event.
🌐 www.pbcawareness.org
#PBCConference2027 #PBCAwareness #PBCDay2027 #PBCAwarenessMonth #PrimaryBiliaryCholangitis #PatientEducation #LiverHealth #HealthEquity #PBCWarriors #WashingtonDC
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Community Conversations: PBC Impact on Black Women
Real PBC Talk: Beyond Tired Official Teaser Trailer
PBC Awareness, NFP was a featured guest on Behind the Mystery: Rare Disease Stories on Lifetime
International PBC Awareness Day
FOX 32 Chicago Interview
Alfasigma pharmaceutical company gifted PBC Awareness with a generous $5,000 grant.
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