PBC Awareness, NFP @FriendsofPBC

This is PBC Awareness Month! Achieving optimum #UDCA dosage greatly improves outcomes in #PrimaryBiliaryCholangitis Our #PBC App supports patients to maintain a correct dosage according to their weight Available FREE on AppStore & GooglePlay @PBCFoundation drfalk.co.uk/patient-apps/

#PBCDAY 2026 | PBC AWARENESS MONTH Primary Biliary Cholangitis (PBC) is a rare, chronic and progressive liver disease. For many people, timely diagnosis, effective treatment and regular monitoring can help change the course of the disease. But when PBC progresses, the consequences can become much more serious. Advanced disease can lead to **cirrhosis and liver failure. People with PBC who develop cirrhosis are also at increased risk of hepatocellular carcinoma (HCC). And for selected patients with end-stage liver disease, or in certain cases of HCC, liver transplantation can become a life-saving treatment option. This is why PBC cannot be considered through only one policy lens. PBC connects the European agendas on rare diseases, cancer and transplantation. Europe’s Beating Cancer Plan already addresses the cancer pathway from prevention and early detection through diagnosis, treatment and quality of life. European cooperation on organ donation and transplantation has similarly focused on improving organ availability, the efficiency and accessibility of transplant systems, and the quality and safety of transplantation. The shortage of available organs remains a major limitation. For ELPA, these policies should connect around the person. Diagnose PBC earlier. Monitor treatment response. Optimise treatment when needed. Prevent avoidable progression. Identify and monitor those at risk of HCC. Ensure access to specialist and multidisciplinary care. And when transplantation becomes necessary, ensure timely and equitable access. A stronger European approach to rare diseases should recognise this full patient journey Because the objective should not simply be to manage PBC after complications appear. The objective should be to prevent as many complications as possible. And when advanced disease, liver cancer or the need for transplantation cannot be prevented, every patient should have access to the best possible care — regardless of their country, postcode or socioeconomic situation. #Rarediseasepolicy. #Cancerpolicy. #Transplantationpolicy. For patients, these are not separate worlds. They are different parts of the same journey. On PBC Day 2026 and throughout PBC Awareness Month, ELPA calls for Europe to connect these agendas and turn scientific progress into earlier action, better treatment, equal access and better futures. MORE OPTIONS. MORE HOPE. MORE TIME. From rare disease to cancer prevention. From treatment to transplantation. From European policy to better lives. #PBCDAY2026 #PBCAwarenessMonth #PBC #PrimaryBiliaryCholangitis #RareLiverDisease #RareDiseases #LiverCancer #HCC #CancerPrevention #EUCancerPlan #LiverTransplantation #OrganDonation #EqualAccess EU Health and Food Safety WHO Regional Office for Europe EURORDIS-Rare Diseases Europe

In honor of #PBCAwarenessMonth check out the @FriendsofPBC real patient interviews. #PrimaryBiliaryCholangitis #LiverHealth #PBCDay2026 #MenwithPBC youtu.be/94eH2Lv73Lo?is…

ELPA #PBCCALLTOACTION 2026 MORE OPTIONS. MORE HOPE. MORE TIME. From awareness to action — building better #PBCcare across Europe #PBCMonth is not only about raising awareness. It is about turning awareness into earlier diagnosis, better monitoring, better symptom management, more treatment options, stronger patient voice, equal access and European action. ELPA is bringing these priorities together in one #EuropeanPBCagenda: #DIAGNOSIS Earlier recognition. Earlier referral. Better starts. #TREATMENT The right treatment, for the right patient, at the right time. #MONITORING Know the response. Reassess risk. Act when treatment goals are not being achieved. #SYMPTOMS & #QUALITYOFLIFE Pruritus, fatigue, sleep, mental wellbeing and daily life must matter in PBC care. #PATIENTVOICE People living with PBC must help shape research, treatment decisions, care pathways and health policy. #INNOVATION Scientific progress is creating new possibilities — but innovation matters only when it reaches patients. #EQUALACCESS Where a person lives in Europe should not determine access to diagnosis, specialist care, monitoring or appropriate treatment. #RAREDISEASEPOLICY PBC must be recognised within the wider European rare disease agenda and future EU Rare Disease Action Plan. #RESEARCH & #PATIENTEVIDENCE Clinical evidence and real-world patient experience must work together to define better PBC care. #SHAREDDECISION-MAKING Patients should understand their disease, their treatment response and the options available to them. #PREVENTINGPROGRESSION Earlier diagnosis, appropriate treatment and continuous monitoring can help reduce the risk of advanced liver disease, complications and transplantation. #EUROPEANCOLLABORATION Patients, hepatologists, researchers, policymakers, healthcare systems and patient organisations must work together. MORE #OPTIONS → MORE #HOPE → MORE #TIME → MORE #VOICE → EQUAL #ACCESS #THEELPAACTIONISCOMING During PBC Month 2026, ELPA will bring together the patient community, leading European experts and key stakeholders to move the conversation from awareness to action. Through the ELPA PBC Events, patient advocacy, scientific dialogue and European policy engagement, we will ask one central question: How can Europe turn scientific progress in PBC into better outcomes for every person who needs it? Our goal is clear: A EUROPE WHERE EVERY PERSON WITH PBC HAS MORE OPTIONS. MORE HOPE. MORE TIME. MORE VOICE. EQUAL ACCESS. #PBCDAY | #PBCMonth2026 @OliverVarhelyi @hans_kluge

Delayed diagnosis is a common issue for Black women "Isn't it a shame you have to have high dollar insurance to get access to appointments' -Dr. Gunn #PrimaryBiliaryCholangitis #RareDisease #PBCAwarenessMonth #HealthEquity

Delayed diagnosis is a common issue for Black women "Isn't it a shame you have to have high dollar insurance to get access to appointments' -Dr. Gunn #PrimaryBiliaryCholangitis #RareDisease #PBCAwarenessMonth #HealthEquity youtu.be/YrdQuhHRSlA?is…

#PBCDay2026 #LiverHealth #YouareNotAlone

L. Marie Asad @LmarieAsad

3 weeks ago

In honor of Primary Biliary Cholangitis (PBC), Awareness Month it was an honor to join three brave black women sharing their lived experience and what led to their rare disease diagnosis. A special thank you to @FriendsofPBC and Dr. Gunn #PBCDay2026 #LiverHealth

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"We may look okay on the outside, but there's a battle going inside our bodies" ~#PBCAwareness #PrimaryBiliaryCholangitis #patientadvocacy @FriendsofPBC #LiverHealth youtu.be/vQK8iXibnMU?is…

#PBCAwareness #PrimaryBiliaryCholangitis

ModernMedics @ModernMediks

6 months ago

💊 PBC patients with uncontrolled itch finally have a targeted drug. FDA approved Lynavoy (linerixibat) March 19, 2026 — FIRST EVER for cholestatic pruritus in PBC. → 56% vs 43% meaningful itch relief → Onset: Week 2 → Oral IBAT inhibitor · 40mg twice daily 🔔 Follow for

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Here is an inspirational article to start your week! Do not despair, there is always hope, and you are never alone! #primarybiliarycholangitis #AutoimmuneDisease #RareLiverDisease nz.news.yahoo.com/liver-transpla…

Join PBC Awareness, NFP, in recognizing World Liver Day on Sunday, April 19th! Organizations worldwide will show their commitment to raising awareness of liver health and patient care. #worldliverday #liverhealth #PBCAwareness

To anyone who has felt let down because Ursodiol isn’t working well enough… We see you. And we want you to know: This is not your fault, and you are not out of options. #PBCawareness #UrsodiolNotWorking #PBCwarriors medscape.com/viewarticle/ne…

Here's the four stages of Primary biliary cholangitis (PBC) #liverhealth #PBCAwareness via @Healthline healthline.com/health/primary…

2 days away! The 2026 ReBirthday Celebration is almost here 💚💙 Join us for this special virtual event honoring liver transplant recipients and the incredible power of organ donation. Don't miss the opportunity to hear inspiring stories, celebrate hope, and learn about the life-saving impact of liver transplantation. 🗓️ April 11 🖥️ Free & virtual 👉 Register today: alf.social/rebirthday26 #ReBirthday #DonateLife #LiverTransplant #ThinkLiverThinkLife #ALF50

If you would like to become a volunteer and assist us in our mission to raise awareness of PBC and support the PBC community, please fill out the form in the link below. #PrimaryBiliaryCholangitis #PBCCommunity form.jotform.com/260984085147061

Approximately 130,000 Americans are living with Primary Biliary Cholangitis, a rare autoimmune liver disease. Your generous donation is essential to advancing our mission. app.teamfi.works/fundraiser/125… #PrimaryBiliaryCholangitis #patienteducation #liverhealth

Join an Ipsen sponsored PBC webinar on April 28th! Join Ipsen for an informative PBC webinar: cloud.us-patient.ipsen.com/Webinar4RegHom… #PBChealth #liverhealth

#RareandReady members - we need your help! Fill out this action alert from @EveryLifeOrg: everylifefoundation.quorum.us/campaign/15954…

EveryLife Foundation @EveryLifeOrg

6 months ago

‼️Attention California residents‼️ The California General Assembly has introduced A.B. 1798, a critical bill that protects patients from genetic discrimination and ensures continued participation in lifesaving research. Members of the Assembly Committee on Insurance have the

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A new study shows that men with PBC may face more severe liver problems and worse outcomes than women. Knowing this helps doctors monitor male patients more closely and tailor treatment plans. #LiverHealth #MensHealth nature.com/articles/s4159…

Our next PBC Warrior interview features Tom Zimmerman from New York. He is a recently diagnosed PBC patient and is actively involved in the PBC Awareness community. #PBCawareness #PBCWarriors youtu.be/10Mc_9FM9MI